Swiss Birth Stories
Our mission is to share diverse birth stories from across Switzerland in a way that empowers the storyteller. We aim to create a supportive space where each person is in control of their own narrative. By recording and sharing birth stories in Switzerland, we hope to inspire those planning their own birth, offer insights for birth workers, or allow listeners to reflect on their own birth experiences. Tune in to hear real, personal, raw birth stories. Available on all major podcast platforms. This podcast is in seasons; during an active season, episodes will be released weekly.
Swiss Birth Stories
S02E01 Sonja: Advocacy, Intuition, High Risk Pregnancy and the Incredible Fight to Change Her Son's Future, Once Defined by Cystic Fibrosis
Sonja's resources are below this description
When an ultrasound technician uttered the words "his neck is sick" during a routine 12-week scan, Sonia's world tilted on its axis. What should have been a joyful glimpse at her second baby instead launched her family into a medical odyssey that would test their resilience, challenge their beliefs, and ultimately change the landscape of treatment for an incurable disease.
Sonia's story isn't just about giving birth in Switzerland (she gave birth at HUG in Geneva)—it's about the extraordinary measures a mother will take when faced with a devastating diagnosis. At 22 weeks pregnant, after a high nuchal translucency measurement led to deeper genetic testing (the story to get there is incredible in it's own), Sonia learned her unborn son had cystic fibrosis. With her first child just 10 months old and no family history of CF, the news was shattering. Faced with the impossible choice between termination and continuing a pregnancy that promised hardship, Sonia did what few would have the courage to do—she questioned everything.
What follows is nothing short of remarkable. Through relentless research, Sonia discovered Trikafta, an expensive, unapproved treatment that might help her son even before birth. She connected with researchers worldwide, joined tiny online support groups, and eventually sourced the medication through a CF patient halfway across the globe. Becoming only the eighth woman worldwide known to take this medication during pregnancy, she watched in awe as her son's previously invisible gallbladder appeared on ultrasound three weeks later—proof the medicine was working.
Despite placenta previa, multiple hospitalizations, and an emergency C-section at 35 weeks, Seth was born fighting. Though separated from him for twelve agonizing hours after birth (prompting a fierce confrontation where she told hospital staff "I am fucking going now"), Sonia's determination never wavered. Today at 20 months old, Seth exhibits none of the devastating symptoms typically associated with CF—no digestive issues, no lung problems, and remarkably, he'll be fertile, something previously impossible for males with CF.
This extraordinary journey showcases the power of maternal intuition, medical advocacy, and the courage to challenge established protocols. Through sharing her experience, Sonia has helped approximately 30 other babies worldwide access life-changing treatment. Her message is clear: trust your instincts, do your research, and never stop fighting for your child's future.
Cystic fibrosis, or CF, is a rare inherited disease that affects about 1 in 3,300 newborns in Switzerland - around 1,000 people nationwide and more than 105,000 worldwide.
CF makes mucus, sweat and digestive fluids thick and sticky, clogging vital organs like the lungs and pancreas.
Once a childhood killer, CF is now a condition where many children born today are expected to live into their 60s. New treatments may push life expectancy even further and research continues to work towards a hopeful cure.
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Welcome back to Swiss Birth Stories. After a little summer break, we are so excited to kick off Season 2. This is the very first episode of the season and we can't wait to share not only this story but also the other 12 beautiful conversations we've recorded with mothers from across Switzerland. Whether you've been waiting for new episodes or you just found us today, welcome. This is the space where we share the diverse, real and raw birth stories from families living in this amazing country. We'd love for you to join the conversation. You can reach us at SwissBirbirthstories, at gmailcom or on Instagram at swissbirthstories, and if you enjoy what you hear and believe in our mission, please share this podcast and consider rating and reviewing it. It helps more people find these stories and we just love hearing from you too. So time to do whatever it is you do while listening to us, like lacing up your shoes and going for a walk, starting that project or cleaning your flat and get settled in. It's time to Swiss Birth Stories. I'm Julia Neal, mother, perinatal educator, hypnobirthing coach and trainee doula.
Christine:And I'm Christina Bliven. I'm a doula, baby-wearing consultant, childbirth educator and mother of three. I'm a doula, baby-wearing consultant. Messages from professionals and a devastating diagnosis of cystic fibrosis. She talks honestly about their struggle to decide what was best for their unborn son. Just when you catch your breath, the story continues with the search for a miracle medication that isn't widely known, bleeding from placenta previa and a placental abruption. Throughout the chaos, we see the red thread of a mother's unwavering love for her children and her determination to do whatever it takes to protect them. Let's dive in. Hello Sonia, thank you so much for joining us. Thank you, we can just start off with a little bit about yourself and your family, where you're from perfect.
Sonja:Hi everyone, my name is sonia. I'm from ireland originally but I live actually on the french side, so technically I'm a frontalier um outside of geneva. I am married to an irish, french man and we met in ireland 16 years ago and then moved to this part of the world six years ago and since then we've been very busy having two little boys, and our eldest is three and our youngest is 20 months. We had two under two highly do not recommend that for anybody listening but we survived the first year and I'm sure in time I hope they will be great friends when they're not killing each other over their toys. And that's yeah, that's me and Michelle. So nice to be here.
Julia:Oh, it's so nice to have you, and I am sure that your hard work will pay off, but yes, I think that that sounds very, very, very difficult to be, very understated about it, very difficult to be very understated about it. So I'd love to hear about your pregnancies. And first, though, what was the road to pregnancy like for you?
Sonja:How did you know that you guys were ready and what did that process look like? Yes, we were together for a long time. I think we were 13 years together before we had our first child. I think I'd been ready for a while. I was the eldest of five kids and I kind of knew that I wanted to be a mom. But I was also very aware of the realities of it. I always viewed it like the Sims, that computer game where you know you have the baby and then you want to kill them in the pool afterwards because it's just too hard. I knew it was going to be tough, but I was up for it and kind of ready, my husband less so.
Sonja:So during COVID we had chickens. And one day my husband came in on a Saturday morning and said Sonia, I've just realized I got up at seven o'clock in the morning to clean up chicken poo. So I think I'm ready to have kids. And three months later I was pregnant with my first child. I wasted no time. Our chickens a few weeks later were actually murdered by, we think, a coyote. So I'm glad in that gap where we had the chickens, he realised his love and care for chickens on a Saturday morning could translate to children, and so we had my eldest Dallian, who's just turned three, in March, and then, very quickly afterwards, we had my eldest Dallian, who's just turned three in March, and then, very quickly afterwards, we had my second son, seth, who is 20 months old now.
Christine:So they're 18 months apart.
Sonja:Wow. So those chickens had one sole purpose, and that was to prove your happiness. Yeah, yeah, yeah, you think I planned it, but anybody listening is is desperate to have a child. Maybe get a few chickens and that'll get it going.
Julia:Julia here. It's my mission over at Happy Day to mentor and support you in creating a pregnancy, birth and postpartum experience that is empowering, holistic and uniquely tailored to your needs. Together, we'll uncover the tools and knowledge you need to thrive with confidence, mindfulness and self-compassion at the core of your journey. That's the reason why I offer my three hallmark courses to parents in person in the Zurich area and online. They are Hypnobirthing Plus Mindful Postpartum Preparation and Hypnobirthing for Planned Cesarean Birth. Check out my website happydayhypnobirthing for planned cesarean birth. Check out my website happydayhypnobirthingch or Instagram at happydaybumpsbabesbeyond for more details, useful content and support. Now on to this week's Swiss birth story.
Sonja:So, what were your pregnancies like? Yeah, so my first um with Dallium was really plain sailing. I had no um, morning sickness, no, nothing, all very easy, um, until the last few weeks, um, he was always breech um, and my second ended up being breech as well. So I think I might have a slightly weird shaped body, um, but he was breech and it looked like the cord had slightly dropped. So I was put on bed rest for the last two weeks and then he was born by C-section at 38 weeks and six days and he came out flying. He was ready to go, ready to sit around with his papa for a few hours while I recovered, and then I got to meet him and he was absolutely perfect. And then my second little guy. That's a slightly different story that we're going to focus on today, but for my first one he treated me very kindly, aside from that's like cord prolapse issue towards the end of the pregnancy.
Julia:Before we ask about Seth, I was wondering if you're comfortable with talking about that bed rest at the end of your pregnancy after feeling so healthy and then being told that, yes, cesarean birth is the best way for you to give birth to your baby. How did you process that and what were you feeling at the time?
Sonja:Yeah, it was weird. It's like I never, actually I could never imagine myself having vaginal birth and because it was during COVID, I didn't do any like official classes, you know, in preparation for it. I could have done something online. And I kind of in my head was like I just don't think that's going to be the way it goes. And so when I was told that he was I was going to need a c-section, I was like, yeah, that kind of checks out. I kind of thought that way.
Sonja:And it wasn't that I wanted a c-section. I would have happily birthed the other way, but I didn't feel the loss that I think I've heard a lot of other mothers who've had c-sections feel, and I'm sure that's a very deep feeling. Um, I didn't, I didn't necessarily have that loss. And then, because of the C-section, the date was set and it's the day after my birthday, which I also before I had him thought was quite cool. And now I've realized forevermore I'm going to spend my birthday preparing his birthday cake. So that was a flawed reality, but I kind of was like at the time I thought that was really cute.
Julia:Oh, very romantic until you're making that toddler birthday cake. Yeah, like what am I doing?
Sonja:yeah, yeah with this paw patrol character and you know sweet potatoes, because I still kind of don't use so much sugar. Um, so yeah, and then the bed rest. It was a few beautiful weeks in March before he came and I just chilled and drank a lot of milk. I had a massive milk craving throughout that entire pregnancy, so I was just chugging down the milk and reading some books about it and because I had so much time, I spent it watching videos around how to pack your pregnancy and delivery bag and all the C-section videos and C-section tips and about all the c-section stuff that you would need off Amazon.
Sonja:I do wish and I would say this to anybody I wish I had spent more time working out how to breastfeed, because that was the biggest shock of my life, that that is the most unnatural thing I have ever done, and I've done it two times and I'm still breastfeeding my 20 month old. For those first three weeks at Dalyan he he lost 10% of his body weight pretty much straight away. We brought him home. He'd gone up a little bit in the hospital, brought him home. He lost a bit more. We were told we might have to bring him back in because I thought my boobs were producing milk and I think he was just sitting there going oh there's nothing, mom, and no one prepared me for how stressful that was going to be. So we ended up supplementing him for the first three weeks and fighting back to breastfeeding.
Sonja:And people have said to me oh, why didn't you let the breastfeeding go? Because it was so, it was so difficult and because that start was so hard with him. I was very stressed around the feeding of him and not trusting of my body and and I I think I didn't let the breastfeeding go because I'd already had the c-section and there was kind of this like view from the world that I kind of had failed a little bit by having a c-section. I didn't want to fail again with the breastfeeding, so I really pushed forward and I'm so glad I did.
Sonja:We had a beautiful breastfeeding journey until he self-weaned at 14 months. I was pregnant with his brother, so I think my my supply had completely gone down and now I've been breastfeeding Seth for 20 months. But I do remember this feeling of like I can't fail at something else. So I do. At the back of my head I do think there's something around the c-section, but um, it was still a good experience for me, that c-section, c-section with Seth again, but my first one was wonderful, um and uh yeah well I'm.
Julia:I'm really happy to hear that it was a the breastfeeding was a good experience after such a hard start, and thank you for saying that. I think it is a sentiment held by many, if not the majority, of moms that they wish they had known a little bit more about breastfeeding prenatally, and actually the studies show us that the best way to encourage people to have a breastfeeding rate sort of longer term is prenatal breastfeeding education. Yeah, thank you for sharing that. I'm grateful for that. Would you feel comfortable talking about Seth, about your pregnancy with Seth?
Sonja:yeah, of course, that's why I'm here. So yeah, so I got pregnant when my eldest was 10 months old, planned. We were absolutely delighted, we really wanted to do them close together and again, hindsight, not such a great idea, but but at the time we were like this is going to be wonderful, two babies, and on my first he was very, very chill. So you know, if you have a first chill child, don't think the second one's going to be chill, because that is not true.
Julia:They're the ones that trick you.
Sonja:Yeah, they trick you I'm very glad I have one chill and one not so chill. Um. So yeah, I got pregnant. I think we'd been trying for maybe two months. I got pregnant on the third month, the exact same as my first. Um delighted to be pregnant, so thrilled, telling everybody straight away just like I felt like I'd gone through one pregnancy like and everything being fine. Okay, we had the bit of the blip at the end, but everything fine. I was like what possibly could go wrong, you know there was nothing, it would be wonderful.
Sonja:So I remember like I think we told my dad it was um Dallian's first birthday and we told my dad, like I was four and a half weeks pregnant and he I remember saying, oh, I just hope everything goes well. And I was like because my mom had five kids with two miscarriages and I kind of went going dad, don't be so negative. Like of course everything is going to go so well. But you know he knows from experience that like sometimes it doesn't um. So we had an early scan just with their OB. I think that's quite common, you know. But they're in seven or eight weeks and we had seen the heartbeat. So really, where everything kicked off off at Seth was going into the 12-week scan, which I kind of didn't realise what the 12-week scan was. I just thought it was to see pretty pictures of the baby and maybe work out the gender. You know, I kind of didn't really think that they were looking for that much stuff. So we went in, had the scan and the lady wasn't super friendly. Who did the scan? She obviously. I asked people to speak in English and that's not everybody's preferred or first or known language and the French for me is still a little bit of a struggle, embarrassingly, six years on. But she wasn't particularly friendly. I lay down the bed and she was doing all the measurements and I could see a baby and he was bouncing. Well, I didn't know it was he then, but he was bouncing around on the screen and my husband and I were like, oh, he looks like his brother, it's so sweet. And then she said his neck is sick at the end of the scan. And we were still lying there in the bed and we were like what do you mean? His neck is sick. Like what is it? And we didn't realize that scan the measurements of a baby's neck to see if the measurement of the neck is larger than normal, it can indicate a range of issues, including Down syndrome and some conditions that are not supportive of life, and we didn't genuinely just didn't know that. So when she said the neck is sick, we're like what, like what? He has no neck, what do you mean? And she goes I think your baby has a high chance of having some of these syndromes. And we were like what? And we were just completely in shock, and I think she was in shock that we were in so much shock, but we were just completely naive.
Sonja:And then I remember saying and putting words in our mouths, not exactly what she said, but basically like, do you even want to know the gender? Now I think I know, would you like to know? And we're like and kind of so to see that there was going to be something majorly wrong with this baby, that there was going to be, um, an issue with him, because if she's not even willing to tell us the gender, like something's gone off alarm bells in her head. So it sort of started this like, oh gosh, there's really something wrong here. And so we said we're like, yeah, you know, of course it's our baby, of course we want to know, because I think it's a little boy, which I remember myself, my husband, were a bit surprised about, because I think we both figured we had a boy, we're gonna have a girl. You know, our life is so perfect and, um, even though all along I've always wanted to have two boys and I always pictured, but I was still a little bit like, oh, okay, cool, um, and then she sat us down and she worked out the sort of figures, so, based on the fact that he had this high net and his measurement was 4.1 and anything above 3.5 millimeters is considered abnormal. And, based on a blood test that I had had done, she worked out that our chances of having a baby with down syndrome was 1 in 16, or edward's syndrome was 1 in 121, I think it was, and we were just like to us that was like this is it? Like he's definitely got this. Like 1 in 16, that's so high. We vaguely remember that Dallian was 1 in 1,000 and something when we had got his results back.
Sonja:So we went straight to our OB. We sat in his waiting room and we said we need to see you. We we've just had this awful scan. We don't know what's going on. And he was so blase. He was like this happens all the time these son offers. They work women off, there's nothing, but we're going to do the NIPT test, um, anyway, and you'll have an early 16 week scan. But really like don't worry about it. And he changed the figures around so she had done one in 16, which made us believe it was 100% he was going to have something. And he's like one in 16 means there's a 6% chance and one in 121 means there's a 0.01% chance. So I did feel like some relief from his blasé-ness that he was like, okay, that's fine, so we're from his blaséness that he was like, okay, um, that's fine, so you're actually on holidays. Um, I almost didn't want to go, but he's like no, go and go on your holidays, you'll probably get the results over them and if there's something you can always come home. And so he went on holidays.
Sonja:On the first day of holidays we got the results from the NIPT test and that was nothing that, um, there was no risk of anything or NIPT isn't diagnostic, but there are odds of having a child with Down syndrome or odds of having a child with Edwards syndrome were so unbelievably low. So we kind of just moved on. You know we were like, okay, we'll have 16 weeks scan, but you know this must be it now and we're kind of in the done. And so we moved forward and we had the 16-week scan back with that lady who had done the 12-week scan and she said everything looks great. There's no issue with the nuchal at that stage. The baby looks totally fine. I can't quite see his gallbladder, but that could be normal at this stage. There's nothing really to worry about.
Sonja:And so when we sat down with her afterwards and she was like so you've met the geneticist. And we're like we met the who now, the what now. And she's like, oh, you've met the geneticist. And I'm like, no, our ob didn't mention it. And she was furious. She was like that is procedure in switzerland if you have a measurement of this size, you should be sent to see a geneticist to talk through the possibilities of there being something else. And we're like, but we had the nipt test done. Or ob never mentioned going to see a geneticist. And she's like no, you need to go and see a geneticist. Basically we'd be negligent if we didn't.
Sonja:And we were like, okay, so she made the booking for us and like two days later we were in this office with the geneticist who was telling us all these risk factors beyond just Down syndrome and these few other syndromes that have been mentioned, that there'd be a chromosomal issue, a genetic issue with them because of this fat neck. And we were like, wow, no one had said this to us. And in the meantime I'm a bit of a nerd. I had been like you know, googling. I was like, oh my god, my husband, there's so much here, there's so much. He could have saw these things, um, and he had been confirmed at that stage as being as being a little boy, um and uh.
Sonja:So we immediately went to get the amniocentesis done, which was recommended by the geneticist, and so we had that done. And just to talk about that, because it's something that I'm constantly correcting women on, in terms of the risk factors of the amniocentesis, so I think we're told it's like one in 200 chance of miscarriage, but from what I've been told it's more like a one in 2000 chance and really in the clinic that I went to in um geneva they never had a miscarriage as a result of um, an amniocentesis, unless the baby had also shown very, um, a bad condition in terms of. So maybe the baby was miscarried after the amniocentesis, but actually the baby was so sick anyway that it was likely not as a result of the amniocentesis. And the figure that we actually get of the one in 200 is from a study done in the 1960s, before ultrasound was actually used to guide the process so effectively. Doctors were digging needles into women.
Julia:That's really interesting because I knew about that, the change and how old that statistic was, but I didn't know what the flaws, I didn't know what, what the difference was. And yeah, you need to have a, an ultrasound to guide where the needle is, because they want to find the thickest pocket of amniotic fluid, so that, so that they they're not harming um the baby.
Julia:yeah, but no major study has been done since ultrasound has come into play, so doctors still need to lean on this 1 in 200 figure, which is just another evidence point of how women's health is just so flawed, and trying to find data and numbers for women and women's health, one part, and then also for pregnant bodies, yeah, and how, and trying to find information about that, um, about whatever suggestion is being given to you is, is really hard and the data is often very flawed. Um, yeah, thank you for bringing that up.
Sonja:I remember just hearing that from um, the woman who did my amniocentesis, and just be like, okay, whatever happens through the rest of this pregnancy, I need to be on it. I need to understand my facts and what's going in. And I already felt so sort of blindsided by trusting our OB in the original way and he was still being very blasé about us even going for an amniocentesis and I was like all we're doing is following procedure for Switzerland as laid out. You know, this is what happens when you have a high nuclear translucency. We're not doing anything exceptional or different or being crazy. We're just following the system that's in place. That's all we're doing and it's all covered by insurance for that reason, because that's the way you do it. So, and then the just in terms of the procedure. It was really painless. They brought me into a lovely dark room. I laid down. They told me to think of a beach in Mauritius. I've been to Mauritius, so I did. They're lovely and it was over in an instant and the team that did it were really, really lovely and in fact the lady afterwards said you've had your 16 weeks gone. I mean, there's nothing else, we're not going to find anything here and I remember leaving just being reassured.
Sonja:So the way you get your results from an amniocentesis is it comes in three parts. So the first part is basically a confirmation of the NIPT test. So the NIPT test gives you risk factors where the amniocentesis is obviously diagnostic. So if you have a high risk for baby down syndrome it would be a high NIPT. The amniotic synthesis would say you have a baby down syndrome. But they came out back all clear a few days later. Then a couple of weeks later we got the chromosome results all clear again, absolutely nothing wrong with the baby. And then a few weeks later after that, we were called in for the genetic results. So at this point most pregnancies at the gestation age I was, which was 22 weeks, would have like a 98% chance of having a full-term baby. Nothing wrong, all good where we had a 97% chance.
Sonja:So with all this chromosome checking and everything going on, we were only 1% off, despite the high neck, because everything else had been perfect along the way off, despite the high neck, because everything else had been perfect along the way and we'd had the 20-week scan. For some reason they didn't check for the gallbladder, even though it was on my file that it hadn't been seen at 16 weeks, which they should have done because it was considered a very high risk exam because of the the anucleotranslucency at the start. But anyway, it was missed. But what they did find was a double renal artery, which they were saying is just a variation of normal. Lots of people have double renal arteries, don't know anything about it. It doesn't actually affect you. It's only if you needed to get something taken out, like your kidney taken out, the doctor would need to know. So that was the only thing that was flattered at the 20 um at the at the 20 weeks count.
Sonja:So at 22 weeks, the way they give you results in Switzerland is you have to go into the office to have genetic results. Even if they're good or bad, you have to go in. So my husband and I uh went in and straight away I knew we were going to get bad news. The geneticist was running around like a crazy person and she looked extremely stressed. Uh, I remember her bringing tissues into the room, but my husband remembers that there was two boxes of tissues in the room. So I don't. My memory might be slightly flawed with that, but we had been in the same room before and we had met with a different geneticist and there were no tissues in the room. So I was like we are in, we are in for something here.
Sonja:And it was a 45 minute meeting where she said we have done all this testing. Now you know, you've got all these different results from the chromosomes, everything is fine. And I was like, just tell us, did you find something? We're like just I'm done now, like been five weeks of waiting for results. I was like I need, I need to know. Don't give me the spiel, don't do this geneticist where they draw out your family tree thing. I was like I am done, I need these results. She goes well, we didn't find anything to do with the high neck. There's nothing that has come back, but we have got something else.
Sonja:And then she proceeded to tell us that our son had cystic fibrosis. So in order to have cystic fibrosis, both parents must carry the gene. My husband and I had no idea that we had the gene. It has never come out. As far as we're aware, on either sides of the family there's never been a child with cystic fibrosis before and I think my husband being half French as well, like I just I never. It's very common in Ireland. So I never thought that he would carry the gene and I remember in Ireland on my way to work each day I would walk past the Cystic Fibrosis Association offices and I would go. That's a pretty shit disease to have. I'm glad nobody in my family has that one. So the irony that 10 years later it comes out.
Sonja:But just to explain what cystic fibrosis is, all of us produce mucus in our bodies and mucus has a great role in just keeping our bodies clean. So when we get sick the sour snot comes out and it just keeps us healthy and strong. In a person with cystic fibrosis that mucus is really, really sticky and so what happens is it clogs up your organs. So most people know cystic fibrosis has been a lung issue where it makes it harder for them to breathe. But actually it clogs up your pancreas, makes it harder for you to digest food and also because the mucus it's sticky, it creates a sort of nice home for bacteria. So you would get like a lot of infections and illness. So a cold for someone, cystic fibrosis isn't just a cold. It will lead very quickly to a chest infection which can lead to hospitalization. So it's a really serious illness and really up until um, I think like 20, 30 years ago people died in infancy. You didn't live a very long life.
Sonja:But there are great treatments now um available for it and in switzerland one in 25 people are actually carriers of this gene and that's not meant to scare anybody, but that's the reality of it. And in ireland, because we're so inter incestuous, it's one in 19 um. But again, you can be a carrier and you can have um a baby with somebody else as a carrier and you still only have a one in 25 chance of actually having a baby with cystic fibrosis. So my first son we have discovered since is a carrier um. But but my second son in that um genetic meeting was confirmed as as having um, this, this condition, and again, in Switzerland it is super, super rare. It's less than like zero, point zero. One percent of the population have it. It's like a thousand people in Switzerland that live with cystic fibrosis.
Sonja:So, yeah, so she told us that and then she also, because of the genetic testing, we just ticked a box to say would we like to find out about ourselves, not thinking that anything would come up, and so within this 45 minutes she proceeded to tell me that I also carried a heart gene which can have issues during pregnancy and can lead to death, as well as the gene for ovarian breast cancer, the Angelina Jolie gene, as well as another gene for melanoma cancer. So it was quite the meeting. I remember joking with her. I was like, well, does my husband have anything else? I mean all these things. But we left and we were obviously broken. I mean, we really had got to the point where we thought this pregnancy was on the up, that everything was going to be okay with our son. We had started buying things, you know after the chromosome thing and getting excited and really believing that we were going to be bringing a little baby boy home.
Sonja:And this meeting kind of brought that to a crushing sort of um juncture in the road really, in terms of what were you going to do? And I was 22 weeks pregnant and because I'd only had another baby very recently, I I was a big 22 weeks, you know, I was 30 something weeks looking. I was very, very pregnant and so what the genetic clinic does is they let us meet with the main CF specialist in Geneva the next day. So she made a kind of emergency appointment to make sure we had all the information. We met with her and she's my son's CF specialist and she's absolutely fantastic and she gave us this sunny version of CF. There's a new medicine out there, everything's going to be wonderful. But when you google CF, it sounds like someone's going to be. It sounded like our son was going to be dead at 30 and have a horrible life.
Sonja:And I remember very quickly I went on to Facebook groups. I joined every Facebook group I could find around CF and there there are lots of them and it's all like mummy's groups, you know, talking about their children. I remember like just searching for the word abortion and just going, you know, like, like, what were people doing around that? What were their thoughts around that? And I found lots of chats and saying no, i'm'm pregnant with a baby, but CF, we don't know what to do. And the responses were this is a tough life, this is hard, this child is going to have it hard. If we could go back in time, we would have chosen to have an abortion. If it wasn't so late, we would have had an abortion.
Sonja:And I was just like the CF specialist is telling us this is going to be a wonderful life, but the reality from mums in the groups were like this is just going to be hard, no-transcript. I think they check 5,000 genes out of 15,000. So there could be something else. So in the back of my head then it was like, well, maybe, if we know he has CF, but maybe, maybe there's something else. You know, maybe there's something else. So my husband and I, we did a lot of, we did a lot of soul searching. I drank a lot of non-alcoholic beer on a bench near our house, um, and and we talked, you know, at length and ultimately, you know, I was 22, I think 22 and a half weeks pregnant. We found out. You know, time, time, time was ticking if we were going to go to them we lost you, you never would have thought hold on, hold on, you just froze um, I'm with sticking.
Christine:Oh yeah, so all right.
Sonja:So I'll just, I'll just say back so, um, yeah, so we, we considered abortion and if you had told me that I would have been someone that would have considered that you know two years ago, that I would have been someone that would have considered that, you know two years ago, I would have said crazy, not because I'm against it, just because it just never thought it would be my story, right, and but the more we looked into it and more we look at the fact that we had like a 15 month old at home and you know that wasn't supposed to be our life, right, like you know, we weren't supposed to be. You know, we, that wasn't supposed to be our life, right, like you know we weren't supposed to be. You know we set everything off to have this perfect life and this was going to crush it. But also he was going to have such a tough life. You know that was most important. It was like he was going to live a very difficult life of lots of medicines, of daily physio. He was going to get hit, you know, like just to beat the mucus out of him. They do a lot of tapping and it all felt very, um, intense and ultimately he was going to live a life knowing that he was going to die quite young and that all just felt so sad.
Sonja:So we went back to our OB, um, who you know. We were like, yeah, we did get, we did get a diagnosis after all, glad we did this testing. And he told us that well, in France because we're frontaliers in France cystic fibrosis is one of the top things that you can have abortion at any time in your pregnancy with no questions asked. But in Switzerland you would have to go through a committee and a process in order to do it. So the issue in France was, in order to have an abortion at this late stage, I would have to have gone very far away from home and I probably would have been with an all-speaking French team and I probably would have had to stay in the hospital for quite some time because the hospital was so far away.
Sonja:And then, even though I didn't really think, we thought that way at the time because I think we were very settled on the fact that we were going to have an abortion, the Swiss thing, despite the procedure, they could probably do it faster. They would do the procedure like you, would go through the process quite quickly and they could do it faster. I'd be close to home, I'd be home the next day. It all just felt like this was the way to go. But in hindsight I actually think we wanted the process. We wanted to be seen by a psychiatrist, we wanted to be seen by a second OB. We actually wanted that. I don't think we ever said that to each other at the time, but I actually think and I'm so glad we went that route, like I'm so glad we went that route um, so the first port of call was to see a second OB to make sure that, like our first OB had explained, nothing to us, but that we had understood what we were doing and what we were asking for.
Sonja:And this was one of the most extraordinary meetings of my life. We went in to meet this man in Hashiji, the hospital in Geneva, and well, first of all, he left us waiting for 45 minutes in the room with all the pregnant ladies, um, so that was horrific in the middle of July, um, and I just I remember saying to my husband I've been tortured like we were being tortured here. I think we were there for 45 minutes in the heat, um, all these pregnant ladies coming in and out with their lovely scans, and we were there to talk about terminating our pregnancy and people kind of giving me smiles because I have this cute little bump. And then we went in to see him and he listened to me. He never once addressed my husband, barely said hi to him, it just all on me. And he asked me you know what my thinking was? And I was like, well, I never saw us doing this and this is like being a bit of a surprise, but he sounds like, from everything I've researched and understood, it just sounds like he is going to have a very difficult life and that doesn't seem fair to bring him into this world knowing that he would suffer so much. And he listened. And then he said to me I think you're being very selfish, I think that's a very selfish choice. I think you're doing this for you. And I was like, wow, okay, I'm a bit feisty. So I was like, really, you know, I was really proud of myself because I hadn't cried in that meeting. I wanted him to see me as sane, that I wasn't just this crazy person. Um, I hadn't cried, I hadn't got upset.
Sonja:I've been very like, you know, we've considered all our options here. We believe this is the right option for our family, but also for our son, and that we love him very much. We think this is, this is the right choice. And then I remember him writing down. He's like well, really, you have three choices. You keep seeing it as two choices. And he's like you can keep him, you can abort him, or you can adopt him, or you can adopt him. You know that's an option on the table because other people would want him. And I was like wow, you know, like what do you mean? I mean this is a child that's just going to suffer. So it was like who would what? Why would I want to adopt my son? I want my son, you know, but it doesn't sound like his life will be that great. And then you know. So we went a bit in circles and ultimately he's like well, we need to talk about that, we're putting together a committee to agree it or not.
Sonja:And I remember leaving the room and the first time he addressed my husband he said your wife looks really tired, you should bring her out tonight for dinner and buy her some flowers. I remember I was in the car on the way back and between the tears of this intense conversation we just laughed because it was just so absurd. It was just the most absurd conversation of my entire life. But this man ended up being my OB. I fired the first guy and we actually end up having a lovely relationship and he changed things for me. He made me see it so differently. I would not follow his way of doing it. I would not recommend that to any doctor out there.
Sonja:But I left that conversation going. He's telling me here that my baby's not got like the. He's got a potential here, he's got a life and I maybe I am seeing this all. It was all happening in a matter of and maybe I am seeing this all it was all happening in a matter of days, because I'm so advanced in the pregnancy that maybe I've gone into all these chats and I've just searched abortion. You know, I haven't talked to anybody with CF. I was afraid to a bit because I didn't want to say, hey, I'm thinking about aborting my baby, but what's your life like? And you'll help me decide if that's the right thing to do, and it just felt so uncomfortable. But I got past that. I talked to a lovely mom of a child in Geneva with CF and I talked to a man in Ireland with CF. I went back and talked to the CF doctor. I went into the groups and I started finding Instagram accounts of all these children and all these adults living great lives at CF, you know, and it was such a turnaround and that doctor did that for me.
Sonja:So people listening were like this man is horrid and a little bit he is. He's a crazy guy and we ended up having a lovely relationship. But he really changed my perspective on things in a time where I was so sort of I couldn't it was just so dark that I couldn't see the light and I couldn't see that there was a life to be had here for my family, but also for my little guy, and I'm so grateful to him. I actually need to message him. I'll share him this podcast. I'm so grateful that he gave me that perspective, even though I wouldn't and I said it to him afterwards I wouldn't and I said it to him afterwards I wouldn't have agreed um, um with his, with his methods. And the other thing he said is like um, because, like I was constantly bringing up you know, but the geneticist said there might be something else. It's double renal artery. He was like Sonia, you've got something that is so rare has happened to you. You've had this disease put on you, this condition with your child. That's so, so rare that you're never going to believe. You know you're going to think something else rare is going to happen to you. This baby has nothing else. You know this. He had this condition, yes, but I do not believe that he has anything else. And I think I also really need to hear that because I had such fear from everything. The geneticist said that he had something else. So yeah.
Sonja:So then we proceeded with the pregnancy with a whole new light, very scared but super excited to meet our little goodbye and we started enjoying the pregnancy. We were buying them things, and meanwhile I was doing all my own research and reading everything I could read on CF and trying to see it from all the positive aspects to it, and I came across a story of a mom who was having her third child with CF and had taken a medicine this new medicine and a lot of babies not a lot, 20% of babies with CF are born with a thing called meconium ileus, where basically a bowel obstruction in the womb because of sticky mucus obstructs their bowels and it's horrible because when they're born they often need a colostomy bag. It makes feeding really difficult and they can be in the NICU for the first few months and with having a baby already at home, that was like the last thing I wanted. So she had taken this medicine and this new medicine for CF and it had resolved that in utero. So by her taking it, the medicine had passed down to the placenta and the baby wasn't born with a bowel blockage, still absolutely had CF. It's not a cure, but the early issues were gone, and so I started reading more and more studies on this, and medicine is one of the most expensive medicines in the world. In the US it's $28,000 a month for medicine and in Europe it's about $15,000 a month for medicine. So it's hugely expensive.
Sonja:But I was doing more and more research and I was messaging the CF doctor in Geneva. But I also found some research, more research studies on it and I I contacted every doctor. I messaged everyone. I found all their email addresses. I was like I was a woman on a message and I said I'm pregnant with a childhood CF. It's quite rare to know that you're pregnant with a childhood CF. Normally you find out after they're born, unless they have the bowel blockage shown in utero, um. So I've messaged all these doctors and I heard back from this guy in the States and he was like, yeah, I've been supporting other women and taking this medicine. Um, if you can get your hands on it, you won't get it on prescription, but if you can get your hands on it, I'll support you in how, in how to take it. Um.
Sonja:So then I joined like a Facebook group that had like 10 members and it was like CF Moms on Trikafta, um, which is the name of the medicine, and I just put it there. I said I'm pregnant and this woman got back to me within hours. She had a six-week-old baby with CF. She had taken the medicine while she was pregnant and she knew someone who could supply it to me for 4,000 a month instead of 15,000. So I've been saying to my husband we should just buy this for 15,000. Not that we're rich or anything, but I was like we need this medicine. So when I said to my husband I could get it for four grand a month, he was like, seems like a bargain.
Sonja:So, um, I contacted this guy and, um, he lives on the other side of the world. His story is that he has cf, his country wasn't covering the medicine but he's quite well off, and so he was buying it privately. And then suddenly his country started covering the medicine, so he had an oversupply and he was buying it privately. And then suddenly his country started covering the medicine, so he had an oversupply and he was willing to basically sell it off. And so he happened to be in France two weeks later.
Sonja:So I flew down with my sister, denise, and we met him and I got three boxes of the medicine not for three months to get me through the rest of the pregnancy and a little bit on the other side and I started taking this medicine and we had never seen sex gallbladder on scans not 16 weeks. They didn't really check it at the 20 weeks maybe we did, but I'd had a few scans since and it had been confirmed that they couldn't see it and that's one of the early but not common signs of CF it. It's basically the mucus. The gallbladder is there but the mucus is so erect around it you can't see it in utero and so I took this medicine for three weeks.
Sonja:I became the eighth woman in the world to take this medicine Eighth known woman in the world to take this medicine at Plastid Center and at the first scan three weeks later and we could see his gallbladder for the first time and it was so amazing and there were so many people in the room and I was so happy. I remember this sonographer who's the same lady who had done my amniocentesis. She came in and I could see her just like pressing on the keyboard and she made a smiley face. She said she'd never done that before but she used a colon and a bracket like I make a smiley face over the gallbladder and I printed the picture of it. We were like super, super excited because it was a sign that the medicine was working, that there was, he was having some effect on him and then, throughout pregnancy, he never showed any signs of having the bowel blockages or anything common with them.
Sonja:Cf that's incredible we have this scan. On the 8th of September, which was our wedding anniversary, and the next day we were planning to go away um for the weekend, and so we got in um to Lausanne, and so we went out for lunch in Lausanne. Before we even checked into the hotel, I went to the bathroom and I discovered I was bleeding, and so that's when placenta previa hit. So I knew all along that I had placenta previa but honestly I had taken such a back seat because all our meetings we were talking about me getting on this drug, this. We had to get the OB to agree that I could take the drug and I actually really hadn't had a proper checkup in a long time. So placenta previa had kind of been mentioned, but we were also focused on the baby having CF, that kind of hadn't. I hadn't been given any sort of rule book instructions on what to do if I was bleeding and I hadn't really been. So I, like I knew I had it, but it had never been something we'd really discussed of how important it was. I just knew from my first pregnancy, with the cord prolapse, that I was, I had to be, I had to be careful, and so immediately I went to Lausanne hospital and they checked me. They confirmed that I was bleeding. I was 35 weeks, then 34 weeks, then 33 weeks, then, no, 29 weeks. Then I was 29 weeks pregnant then and so they confirmed I was bleeding and they really wanted to give me a steroid injection straight away for the baby's lungs and clearly I went into labor. But I was freaked out because of him having CF. If the steroid injections would have an effect on the lungs, because it can be, a CF is predominantly, not completely dominant lung condition. So I was saying no, I'm not going to allow that to happen until I've heard from my CF team. They were very ticked off with me, um, and they had got their head honcho down to basically tell me that I again I was being like practically negligent for my child if I didn't take this injection, was like, but nobody can tell me this injection is okay for a childhood CF. I'm like googling chat GPT wasn't as big a thing 20 months ago so googling wasn't wasn't giving me much, but anyway. Anyway. Finally we heard back. It was a weekend. Finally we heard back from the specialist. It's fine, go for it.
Sonja:But they had ticked me off so much in Lausanne that I insisted they send me by ambulance back to Geneva to have it. So I got back to, so it was with my team on the Monday. It was Sunday, so I was with my team in Geneva and I would just really advocate to women if you're not happy with the care that you're getting, leave, move on. Like if I'd stayed in Lausanne, I think they would have kept me for five days. I would have been away from my family when, in Geneva, I had a two night stay. I was allowed to go home because I was close, close enough to the hospital. But that first bleeding and hospital admission. After that I was admitted four more times to hospital, with bleeding including. I had to take an ambulance ride at one time because it was such a large gush I was concerned that my waters had broken. So I was in prenatal care, I think a total of 20 odd days before he was born in Hachegy in Geneva.
Sonja:And I have to say the ladies in the prenatal ward are just some of the most fantastic ladies. They didn't all speak English I learned a good bit of French but we had such a laugh and they would all come in and they would say we've read your file. Wow, what a pregnancy you're having. And we had a good laugh over that. And then anybody. It was a very busy time. So while they were trying to give me a private room as much as possible, I had a lot of guests in with me, you know, because I was the long stay in with me and they would all be saying, oh, it's just terrible, this Muslim had placenta brachial, like me. They were just terrible with placenta brachial and I would tell them the rest of my pregnancy story and they're like you win, you win, you win. That's about it. Um, so yeah, so I, I was there, um a lot in the um, in the prenatal ward and then, uh, it came time for his birth.
Sonja:So my OB had said that I could probably go on until the 27th of October. I'd been so stable this is 2023. I'd been so stable, this is 2023. I'd been so stable. So they wanted to keep me at this point it was like the 13th of October and they wanted to give me another two weeks and make sure he got to like 37 weeks in. But obviously if I bled at any point seriously, they would have to bring me in for a C-section. So 13th of October was actually Friday the 13th in 2023.
Sonja:So on Friday the 23rd, everybody was texting me going. I bet you're going to have this baby today at 35 weeks. And I was like fuck off, no, um, and there was no signs of it, like Obi had been in with me. Um, I had a little bit of contractions, but nothing, like nothing that would indicate that he, that he, was coming. And then, um, they said the night team like into check on me. You get checked like twice a day in hospital, you know, and, okay, the maybe a little bit more of contractions. I wasn't really feeling anything, um, so the sort of night doctor came in and and and she was like I think everything's fine. I texted my husband at 7.32 to say all is good, all is well.
Sonja:And then I got up and I went to the bathroom, came back and my placenta had erupted. So there was blood absolutely everywhere. I had never seen so much blood in my life. I was abs, the bed was covered, my hands were covered, everything. This poor girl that I was sharing beside was 26 weeks pregnant, with placenta previa, and she'd only just arrived in, and I remember being wheeled out with all the emergency alarms going off, just saying you'll be fine. I never saw her again but if she's listening, I hope you were fine, because that was. I'll never forget the look on her face.
Sonja:As I was, like, five midwives were like on top of me. One was like stroking me off because they thought I was going to have to have like a C-section within minutes. Once they checked me they confirmed that everything was fine, and so my poor husband got like an emergency call after being told everything was fine at 7.32. Got an emergency call at 7.36 to tell them to come in straight away. We managed to wait an hour and a half Maybe. It was being checked and there was a lot of bleeding but it had stopped and so I was brought in and I had a C-section which, with the set of previa, I always knew I was going to have. It didn't feel like a massive emergency C-section because I wasn't put out. It felt like my C-section with my first. Just I had a little bit more notice and I remember us all laughing in the sort of pre-op room, just like, of course, friday the 13th, of course, of course he's coming this day, and so the surgery itself was fine.
Sonja:It had been kind of like shift switch time. So I think a few of the staff had been kept on and they seemed a little grumbly. I remember them talking a lot about having tea and I felt different in my first experience with my son. I felt they didn't really keep me up to date a lot, and so my first experience with my son is he was born and he was crying. With this experience, my son has had an APGAR score of zero, which indicates that he was not good um at all. And when he was born but nobody was updating me, I never heard a cry.
Sonja:You know, my husband and I were sitting there for about 20 minutes with really no information after he was born, um, and then my husband was taken to see him and I was. I was there for another 25-30 minutes. I'd lost over a liter of blood, um, so I I think they had an issue with closing me up, but there was, there was no communication. I kept asking, like what's going on? Is everything okay? And they didn't seem to know if my son was okay or not. I mean, I assumed he was. I assumed they would have known if he wasn't, but I was.
Sonja:I really wasn't just getting much updates and I just remember going feeling so helpless because I was just lying there on this operating table. I could do nothing, I could talk to nobody. The French English divide was quite strong and, um, I just felt like, oh my god, this isn't this not good, but anyway. Um, I was then wheeled out and I got to see him for a few minutes. He was on the CPAP machine, um, to help him, help him breathe, and all that's very scary, you know, it's just scary, you know. And after all this thing, this was the last thing I wanted. I wanted to keep him in. I wanted us to have, just like this normal even though it was, it was my c-section a normal birth experience, um, but they were very reassuring at that point that he was really fine, that his score was a 10, five minutes later, so he really made a really great recovery and all was well with him.
Sonja:So then I was brought up to recovery, and what a different experience that was from prenatal. So the prenatal midwives, nurses, were all just so lovely and the recovery ones were horrific. I think they just don't get to have a relationship with the women in their care because you're just there for such a short period of time. So, because of taking the medicine for my son. I wanted to induce breastfeeding as quickly as possible because for the first few days before we started direct dosing him, I was going to have to give him breast milk in order to have the medicine pass through him and we were a little bit concerned that he would go through a little bit of a withdrawal period. So I really wanted to bring in colostrum straight away.
Sonja:And I remember just being absolutely like questioned, like no, you should rest. I was like like I know, I want to get the colostrum going, like get me something they gave me, just like a water cup, like a plastic water cup, and I was there like squeezing my tits and trying to get the milk out and watching videos and I was really upset. I mean, I was very emotional. I just had a c-section that I wasn't expecting to have. On this day I wasn't with my baby. After this whole experience, like and so I was I was very, very emotional. But I I often say to people when I'm telling them this story is like women get emotional. Men would get angry if you keep someone away from their baby, and if it was a man who had just gone through what I had gone through, he would have been hitting people and kicking people, he would have been murdering. I was just crying, I mean, but I remember watching them mock me from like outside the room, like this one's just really emotional, like I think they thought I understood no French, but I understand enough to understand that I was being heavily mocked.
Sonja:So I've been told that I would be able to go see my baby after about six hours. Six hours came and went and I asked they're like no, you're not ready. And I was like okay, well, when? When am I going to be ready? You're going to have to have a shower first. Can I, can I go have a shower? No, you're not allowed to leave the bed. I'm lucky that I recovered quite quickly from c-sections. I didn't have a problem the first time. I'm up, I'm mobile, I'm basically able to run. So six hours turned into eight hours, eight hours turned into ten hours. They finally came and told me I could go have a shower. So I went and had a shower At this point for a couple of hours they had moved.
Sonja:I was in a shared room. They'd moved another woman in with her baby and her husband, so I was on my own without my baby. This woman was in. She'd had a tough time, she was on oxygen, so I mean, god love this woman, but it was like torture to be in a shared room without my baby, with somebody else, with their baby, like it feel. It felt so cruel and as I walked down to have my shower I realized there were empty rooms on that floor so they could have absolutely put this woman in a different room.
Sonja:Like I don't understand their policy and I have addressed this with the hospital since I haven't been quiet about it. Was your baby in the NICU? Yeah, so he was in the NICU. Yeah, he was in the NICU. So, but even still in Hachouji, if you have a C-section, you're separated from your baby a lot of the time and you go to recovery and the baby goes with the dad, but maybe not for as many hours as it happened with me.
Sonja:So I had the shower and then I got everything ready and quite funny because I'd been in hospital for so long before he was born, I just had a lot of stuff and I kind of was between wash days with my husband taking home washing and stuff, so like I had like suitcases galore, like they. They really thought I was loco when I finally moved down to the mother of baby ward, a woman actually, uh, accused me of robbing from another woman because she couldn't believe I could have that much stuff. No, no, no, it doesn't mean here, I've just lived here for a long time. And so I remember like packing, like organizing my stuff and packing it up and I finally I just got like it became too much. So I stood at the top of the corridor and these nurses were at the end. I said I am fucking going now. I do not give a shit, I'm not staying here one more minute, I'm gone.
Sonja:I had my bags and I remember them screaming to get the doctor and finally these two young doctors appeared. I was in hysterics, crying. I was like you have, this has been too much. Now I've been away from my baby now for 12 hours. You told me I'm just sick, so I would be able to go see my baby, and I stormed out. I just said you're knocking me down and I waddled my way down. I I knew the hospital layout quite well, so I just left. I just left, I waddled down.
Sonja:The only thing I didn't realize is at the NICU, you need a special card to get in the doors. So I got stuck at the doors. They did catch me, but I basically told them I've never been treated so cruelly in my entire life. You have mocked me. You've kept me from my child, like to me. You've kept me from my child like I am gutful. And so my poor husband.
Sonja:I arrived down and, uh, like I was a mess and these nurses were like coming after me and they were explaining to my husband in French, like what I had just done and how I'd been so rude and blah, blah anyway. Um, so I was very happy to be down there and I got to meet my baby and that's, that's, that's all I wanted, and but I refused to go back up to recovery. So my husband had to go up during the day and get the drugs that I needed, and then, I think, they came down and did one check on me down in the NICU, which apparently they don't normally do, and then I was moved to the proper ward where I was going to stay for two days recovery. But I basically refused to go up there. I was like I'm down here in a nick, you're like I don't, I don't care, I don't want to have any, I don't need any treatment, which in hindsight is a mistake. You do need care, women, after you have your babies. But I was just so peed off at this point that I was like refusing to oblige um. So we basically made a deal with one of the nurses up there that I would, that my husband would contact like when I wanted to go up and she would be in the room ready to see me. I'd go up for that period of time and I'd be able to come down with my baby. Because a lot of times when you go, anybody knows you you had a baby, you ring that bell, they come. When they come, you know they don't really come straight away. So I wasn't going to leave my baby down the NICU and sit upstairs for 45 minutes waiting for a nurse to maybe come around.
Sonja:Um, so, um. So that was kind of the, the experience of the recovery it was. It was just really disappointing, especially after just having such a good experience in the prenatal um. But my son, yeah, he was in um, he was in the NICU, sort of the NICU, nicu for 30-ish hours. And then Hashushi in Geneva has a lovely facility called the mother and baby suite and I think there are only four or five rooms but it's for babies who need to stay there longer than the. The mums and you're in a large room but you as a mum are in charge of, of your baby, you're on camera and the baby's on, like um monitoring equipment, um. But he got moved in into there until he was ready to go home. So we spent eight, eight days in that mother and baby. You know, technically I was discharged, I think, after the first day so I had to pay like I think 50, 50 quid a day or something to stay there, um with him, um, and it was a really lovely space and the nurses there were were much better.
Sonja:I think my only sort of learning back to the hospital from them is I had a lot of because of him having CF. There was a lot of attention on the fact that he was gaining weight and I was breastfeeding and it was very clear that my milk had really come in my body. Obviously, you know, I'd only stopped breastfeeding my first son at 14 months. My second son was born. My first son was 18 months old, so I'd only not been breastfeeding for four months. My body knew to produce milk. I was like a fucking cow and it was such a different experience from the first time where I couldn't get any milk at all, like I was only pumping into these small little bottles and I was constantly overfilling. There was just milk everywhere. I was going down the ward offering it to other mums. Nobody took it. Also, my milk had the Dacafta drug in it, so not really wise to give it to other people. And I was pumping but the nurse would come in and ask how much is your baby drunk? How much is your baby drunk? So I just didn't want the stress.
Sonja:So very quickly I moved to just pumping and bottle feeding him within the NICU for those eight days, because I just couldn't handle him coming in and going. Well, he sat on my boob for half a day I have no idea how much he drank and we did some weighted feeds, um, but they never seemed to work. It's like he never, never looked like he had got anything, even though I'd sat with a lactation consultant and she said, yeah, he's clearly drinking and he was gaining weight. Um, so I we'd stopped, we stopped doing weighted feeds at that point and I just did the bottle feeding. And then, as soon as he came home, I had a really good, um, um, sort of um post birth midwife, um, who came around the house pretty much every day for the first couple of weeks and she watched feedings and helped my anxiety around the feeding, especially after the first experience with my eldest, and so that was sort of difficult in terms of I really wanted to breastfeed him from the start and just feeling like I was under too much of a microscope to do it and having to do the bottle feeding.
Sonja:And then, um, he obviously got a lot of attention, um, when he was born, in terms of checks and we actually discovered that he doesn't even have a double renal artery, so things they had seen on the scan the whole way through wasn't even there, and the thing that had and and still isn't and has never definitely isn't isn't there, um, and then, since he's been born he's 20 months old now he became the youngest baby in the world to start this medicine, which I understand is a complete privilege the fact that my husband and I can afford to give him this medicine. It's 4,000 a month for an adult supply. So we actually grind up his medicine. So we're like a little lab here at home we grind it up and we give him a very small percentage of an adult. So we're like a little lab here at home. We grind it up and we give him a very small percentage of an adult dose still. So four months or one month supply for an adult actually lasts about six months. So it's not. We don't spend four grand a month on the medicine. We're not. We're not super wealthy um and we've had to buy a few, a few more boxes. It has not been approved for early access for him um in switzerland or in france. We just got a denial on that um because he's in too good a health um to get early access to medicine um.
Sonja:But there are three things typically associated with cystic fibrosis in that um obviously lung issues. My, my son recovers from colds completely normally thanks to this medicine um. Typically a person with cystic fibrosis needs to have medicine every time they eat in order to be able to digest the fat in their foods. He doesn't. He never has. His body completely works normally that. We check his poo every month to make sure it still is. So I'm getting very good at putting poo in pots and sending it off to labs and we have a little fridge at home just to store his poo, which is something I never thought I would have as part of my parenting journey.
Sonja:And then the third really cool thing is typically men with cystic fibrosis are infertile. They can't have babies the natural way. They do produce sperm, but the tubes that get the sperm out of the body are corroded by the mucus and it's viewed that that actually happens very early in utero. And because I only started the medicine with Seth at 26 and a half weeks, I was told never to hope that we could have preserved his sperm ducts. But we did, and so he is fertile. So while he officially genetically has cystic fibrosis, he lives with none of the side effects of the disease. I thought, yeah, things could change, but right now he is absolutely thriving and perfect, and I've been very vocal with our story and as a result of sharing his story, we've helped maybe 30 other babies access the drug and have healthy starts to their lives. Um, so it's been. It's been a beautiful um journey in the end, as traumatic as the process and as the process was thanks to you I mean the, the tenacity and the you know, stick to it.
Christine:And all this going deeper and not taking people at their word, and yourself, yeah, it was wild mind-blowing, yeah, wow yeah it was.
Sonja:It was, uh, pretty intense and actually, as I was thinking of how to you know, thinking about it again because I hadn't thought about it in a long time, the story, you know, and I was thinking about it in preparation for this, for this chat, and I was like, wow, you can do hard things. Huh, like, like um, because we're great now. And for a long time we didn't think we were going to be, we thought our lives were over, and I remember, like the mindset shift of like why us to why not us. You know, one thing we have to be careful of, would say although, to be honest, we don't know how careful we need to be is not, um, I don't even a situation where you get respiratory infections very young? Um, so we've kept him out of child care we have a nanny, you know, once a week, but I have the luxury of, I could afford to be at home.
Sonja:So it became this thing of why us? We set up this perfect life. You know we've done well for ourselves to why not us? We're exactly in the right position to have this child and he's I mean, he's an absolute mood, but he's, but he's wonderful and our family is totally made by him, um, and and so we feel very lucky. You know we're unlucky, uh, to have this condition of hit our family, but we're very lucky to have him. And while I would take the disease part away from him, I wouldn't, I wouldn't change him for the, for the world, and uh, and I feel very proud, um, of the fact that something that was so dark, this, we found the joy in it, and I think that's that's just a lesson to that through the darkness there's just always so much light and just so much to be happy about.
Julia:And I hope that you feel really proud of yourself with the advocacy that you played in your role, like for you and for him, of course, the image of you hours after having a c-section just at the end of the corridor, um, I, that is something I will never forget. This, I can see it in my head and I'm just quite wild. Yeah, in awe of you, just completely in awe of you, um, and I know that feeling. You know and a lot of mothers know that feeling. You know, and a lot of mothers know that feeling when you're separated from your baby.
Julia:This, your baby was very, very young, was too young to be separated from you for that long, and you knew that. But that feeling of being separated from your baby, I often will say it does, it can feel like your arm is cut off. We'll say it does it can feel like your arm is cut off. Yeah, you know and you, this really exemplifies that that there is an other worldliness to this connection. Um, and yes, I mean, like you, you must recover well from cesarean birth for this.
Julia:But this is another level of just. You know, you've also a lot, a lot of lost, a lot of blood at this time as well. You've gone up to have a shower just a few hours after having a cesarean birth and blood loss. Your tenacity and your strength is mind-blowing. And I know that strength. You really only look at it in hindsight. Right In the moment, you're not thinking this is strong, you're just thinking this is my baby and I'm going to make, I'm going to get to him. Not thinking this is strong, you're just thinking this is my baby and I'm gonna make, I'm gonna get to him, um, but uh, I hope that you do.
Sonja:You are in awe of your strength too, sometimes, because I am completely in awe yeah, it was, I think, because it was the end of the journey, right, like the pregnancy been so hard. I didn't want this outcome in terms of the birth, like that, and then to be separated from him, and we had been told that if that did happen you know, if I did have to have an emergency c-section and I was separate for a while that I would access to this camera, that I'd be able to see him in the NICU. And then I got told that didn't exist, you know. Afterwards, so even in my head, it was like I kind of had said, okay, maybe if there's six hours away, but at least I get to like see him on camera. Like, of, of course, my husband was sending you know photos and everything, but it just wasn't.
Sonja:It wasn't the setup that I had, I pictured. And then the treatment was the added layer of how poorly treated I was in, the fact that I was just like a very emotional mom who just wanted to be with her baby and there was no sort of compassion for that. No sort of compassion for that. So I do hope there were some lessons learned from that experience at the hospital in terms of the treatment aspect to it, because, yeah, it's not right and, as I said, I think men would be vicious and I just was emotional.
Julia:And if there were men murdering the nurses, maybe change would have happened quicker um, you know, like imagine them trying to take their arm away, like that is what it feels like right and yeah, um, yeah yeah, but yeah, it's just um like.
Sonja:There are a few sort of things that came to mind when I was thinking about sharing the story, and you know obviously the first one is I'm just so glad that we live in a country where abortion is possible and is accessible, because I've been seeing what's happening now in other countries and in Ireland abortion wasn't allowed for a long time until a lady died from sepsis because they wouldn't give her an abortion and she was so terribly sick and that changed the rules in Ireland. And while we didn't walk down that path and I'm so grateful that we didn't I am glad there was a process in Switzerland that helped us navigate that. Again, it was an interesting process. I'm not sure I would recommend it entirely, but it was good that we were carried a little bit through that decision making process. But I'm just glad we had the option and again it gave us a little bit of power.
Sonja:My husband and I are a bit type A and you know CF was put on us and we didn't know, we had no idea we carried the gene, we had no choice in this and having the choice at that point to either you know which door to open was actually very powerful for us and it is something that it's like now.
Sonja:It's like our mindset CF didn pregnancy and have our son we're so grateful that we did it, we're so grateful that we had the doors, that if it just felt like you have a child with CF and that's it, like you have no choice, you have no power over this, I think our mindset around it would have been very different. Like I'm glad we got to look at both options and pick the right one for our family and I would never judge anyone for choosing a different decision. And I think it's easy to judge when you're not in those shoes. And I think before I had said I always would have said at 22 weeks someone's saying I'm having an abortion, like that's just wrong. You know, like that baby's a baby, but you don't know until you're in the reality of making that heartbreaking decision that actually it's a helpful and necessary option to have and you don't know if you've gone through, if the only pregnancies you've ever experienced are these ones which are just like, oh, a 12-week scan, is that when we see?
Julia:you know, I don't know the ifs no exactly?
Julia:Is that when we get to see their little profile for the first time and then, oh, the 20 week scan? Is that when we get the confirmation of what their sex is? If you go through pregnancy, thinking that having that, those experiences, and for those people who've had that, it's wonderful. But there is a whole other side of pregnancy and diagnostics that I hope no, no one gets to know. But the problem with no one knowing is that they then can have opinions about things that they really know nothing about until they're put in that shoe.
Sonja:In those shoes, yeah and then that's the other point just around. You know, trust your medical team, but don't blindly trust and go with your gut. You know I knew when our OB was saying you didn't need to go with any further testing. I knew that was wrong. I had done my own research, I knew. But I was like, well, he's the expert, he's the OB, what do I know? Um, so we went along until you know that sonographer was like whoa, whoa, whoa. You should be following the process here and you know.
Sonja:And then with my son and the medicine, you know our CF specialist. She still can't offer that to other families that have since found out they're having a child with CF because it's off label, it's expensive and you know there's no sort of proof in terms of that. It's safe for children under the age of two. Trichophthys only approved for children over the age of two in Switzerland and most of the world. And so if she had another patient or another mother came in with a child, she would never be able to say, hey, I actually have this family that have been able to do this and their child is living a completely different life. She is completely. She's not allowed to speak about it, she's not allowed to share that because it's not approved medication, because there hasn't been a study. So if you find yourself in a shoe the shoe, my shoes, hopefully not. But if you're ever in a medical situation, you need to do your own, you know, your own research. You need to listen to your doctors, but you also need to see what else is out there and what else is possible.
Sonja:And that's been the scary reality. Our lives could be very different. I think our son would still be relatively healthy. Cf is progressive disease, different. I think our son would still be relatively healthy. Cf is progressive disease. But the reality is he could need medicine every time he eats. If I hadn't taken that medicine and got him early access to it, we could have been in and out of the hospital multiple times. We're not. Some people with CF are perfectly healthy for a great number of years and, with the treatments available, still are. But the reality is, without this medicine he would be infer, infertile. We would be doing physio at least three to four times a week. It would take up a lot of our family time. We don't. We only do it every second week once.
Sonja:Once every second week, just as preventative and just so he understands what he's used to it and gets used to it, not from a need perspective, um, and he would be infertile and need medicine to eat all the time. That's a lot for any family to manage, on top of stress over sicknesses and all the rest of it. But yeah, our doctor would never have been able to recommend that medicine to us. That came through research.
Julia:Will his medicine be covered then, from when he's two, from when he's?
Sonja:two, yeah, it'll be. It'll be fully covered. For the rest, for lifelong. Yeah, so he'll be on that medicine unless a new medicine comes up or a cure. You know, things are happening um genetic therapies. I think it's an exciting time. Um, but as of right now, he'll be on that medicine twice a day. Um for the for the rest of for the rest of his life and as long as he continues to tolerate it. But yeah, so far so good.
Christine:Hi, I'm Christina, a doula, baby-wearing consultant, childbirth educator and mother of three. I'm the owner of Lilybee, a family hub in Zurich where you can find resources, community and support in English as you begin your journey into parenthood. It takes a village. Find yours here. I'm curious you said that most people don't find out during pregnancy.
Sonja:Was the neck measurement related to this or a coincidence? Completely unrelated, there is nothing, um. So our joke now is that he purposely made his neck fat just okay.
Julia:Hey, mommy, you mentioned as well, it was 4.1 right, there's no link and you mentioned it was 4.1, 4.1, yeah. So, um, yeah, there's, they can, they can be 12, like they can. They can be, they can be really really really quite big and the sort of cut off further investigation is 3.5. So, um, it wasn't like a wild measurement, you know what I'm saying. I mean, of course, at the time it was a wild measurement, right, um, but yeah, that isn't that interesting how that's, yeah, but it sent down this road or did it send you down this way of thinking maybe?
Julia:the, the high neck, yeah, yes, like it sent you down a road of questioning, of looking into things. That's, that's what I mean.
Sonja:Yeah, yeah, exactly yeah it made me realize I can't go into medical appointments. So when I knew what I had done with the first 12 week scan, you know that I was just completely and then I didn't do the research to know. You know, my gut was always telling me that the OB was being too blase. Now it turns out that he in some ways was right to be, because there was nothing there to do with this high neck right, because the CF diagnosis was completely unrelated to that. But there's a gut, there's a gut instinct there that you always need to follow and I think you know I've worked with medical doctors for a lot of my life and you know they're smart people and they're egotistical people and it can be really hard to go up against them. It can really be hard to say, well, I don't understand, or I still have some questions.
Sonja:And our OB was, you know, the original OB was very, you know, blasé but not very communicative about anything. And we should have changed OB earlier on as well, as you know, like we weren't really comfortable with him. But we my first son, we really hadn't had any complications and and then, and then this pregnancy was different. So it's also like you know, make sure you have the medical care arranged you that you, you like and that you trust. And if there's anything there, that's only going to become 10 times worse if something else comes up right. So if you're seeing an OB right now and you don't like that person or you don't really trust what they're saying, like move on, because at some point you may need to really trust them and and you won't or, um, something will be could be missed, not not always.
Sonja:Most pregnancies go very smoothly, um, um, but uh, yeah, I think it is really, really important to to advocate for yourself and and to do your own research, as exhausting as that is. I was exhausted. I spent, you know, all day with a toddler and online researching cf, like it was. It was hard, but, god, I'm so glad I did and now I'm the expert, right, and I think that's what a lot of moms of any sort of medically complex kids find that they become the experts in their child's care and the doctors look to you and I still find that frightening. When I go to my son's CF clinics he has them once every three months and the doctor kind of turns around to me and is like so what do you think? Do we need to up the medicine you know you? Kind of sort of, because he's the first one to do it, we're sort of guessing dosage levels. I'm like sure, why not, let's give him more?
Christine:I have no basis for this understanding um but that's so wonderful, because you know your son yeah, so that even at the lower their ego, to ask you with your experience, what do you think? And then you can get their opinion as a medical professional and just working together rather than kind of a top down.
Sonja:That is, yeah, no, it's been after they again with her in particular, the cf specialist engineer. She's just so fantastic and she doesn't bring ego. She's one of the first doctors really I found that that doesn't doesn't and has always been willing to support this, and it was helpful to find the doctor in the States that understood what he was doing, so we got the information from him in terms of how to dose and side effects look out for and how to test my son to make sure that it was working okay.
Julia:So, yeah, it's all been a massive learning um on it wow and um we'll put any resources that you can share um down in the show notes uh of this podcast episode. Um, I know that if, uh, if someone needs it, that they'll be really grateful that it's there.
Sonja:That's pretty good chatting to you guys.
Julia:That was good, before we go, we do have one final question. We ask all moms and I'm very curious about this one um, the question is in this whole process of becoming a mother to both your children, what would you say is your most brilliant moment?
Sonja:probably telling those nurses to fuck off to be honest, because how could it be anything else?
Sonja:it's just so necessary, it's just so necessary. Yeah, I think that, and I hope in time when I get to tell my son this delicious story of his birth. And we called him Seth, which is one of the hardest names for French people to pronounce my French husband didn't really tell me that but the S and the TH and it's very complicated, and so they basically call him the number seven in French. They call him Seth, and what's funny about that is to kind of say Seth, you kind of spit and he's got CF. We have to be careful of him with germs, but I've given him a name where people spit on him. So it's not ideal, but we gave him the name because it's the Egyptian god of chaos was Seth, and we were like there is no more perfect name for this child than Seth, and so we're very proud of his name, even though it is unpronounceable, and it's just given him another issue on top of CF to deal with in the classroom.
Christine:Which also fits perfectly right. I mean that just.
Sonja:Yeah, but I hope when he hears his story that he will just be really proud, that like proud of his fat neck and proud of his mummy, who told a lot of people to fuck off. And in the mother and baby room as well, I was having a bad day. You know postpartum hormones and the fact that I had to pump and give him bottles because I was put on so much stress about the feeding. I just didn't want it to be a stressful experience this time. In the midst of this, a chaplain came in and she said how can I bless you today? And I said you can bless me by fucking off. So I really had a reputation. The fact that I'm not having a third child is basically because I'm banned from Hashijin maternity.
Julia:You need to find a different hospital like and I remember I was like you can bless me by fucking off like I'm unsolicited, uh completely unsolicited.
Sonja:Because I asked everybody afterwards because because you're on camera in the mother and baby room, I thought maybe people could see that I was having a bit of a quite upset that day. So I was like, are they just spying on me, you know? And so I was like did anybody send this in? And because I, the CF doctor, had been down and she's super nice, she even went off and like she asked everybody. She's like well, did you send someone in? Like, and they're like no, no, she just randomly came in.
Julia:I was like, yeah, um, luckily my son's still allowed in for his care, but I'm I'm, but they're on watch when you come in because you are a strong mom who can tell people to fuck off when it's time to fuck off I hope you're allowed to swear on this podcast. That'd be pretty bad. Every podcast so that I actually had to look into this. Because it's about birth, I have to click the explicit button, no matter what. Ah, okay, so it doesn't like we could be literally swearing the entire time. It makes no difference because I have to click the explicit button anyway, so whatever, well, I'm irish so, yeah, I can't help myself.
Sonja:It's part of my natural language, um, but yeah, definitely oh my god, sonia, this has been amazing.
Julia:I'm so grateful to hear your story and seth's story. It is completely unforgettable, is completely unique. Um, you are completely unforgettable and unique as well, but this has been a privilege, an absolute privilege, and we say that about this podcast, but it really is true and there is no truer time to say this is that is a total privilege to be able to hear these stories and to be able to share them, and I'm just so grateful to hear it and to be able to share this. Thank you so much.
Sonja:I think it's really important. I think I know with a lot of my friends, as more and more of us start having babies and multiple babies, we start talking about our stories so much and even if it goes well, it's probably not what you thought it was going to go, or different, or something happened afterwards or you got mastitis or something like. I do think we need to talk about it a lot more. Um, and especially the breastfeeding. To be honest, up top it's like literally the most unnatural thing I've ever done is breastfeed my two children and everyone was like but it's the most natural thing. And I remember the midwife just like picking my boob up and placing it into my son's mouth and I'm like that's how you do it. And I was like, well, but nothing's coming out literally like it's top five.
Julia:One of the hardest things I've ever done is breastfeeding newborn.
Sonja:I totally understand yeah, I can understand why people move to bottles.
Julia:Um, because it is, yes, this is why you don't judge until you've been there and be like, oh, I understand why people don't do this. Yeah, yeah, like I get it. But then you get to six months and you're like, oh, this is the easiest and best thing ever, yeah yeah, like, yeah.
Sonja:Then you get to 20 months. You're like, please stop.
Julia:I've also been there, yes.
Christine:I don't know. I feel like it was around 20 months I mean six months that my daughter started doing breastfeeding yoga, where she would keep her mouth attached and the rest of her body is like all over, and I'm like, please, one or the other, one or the other.
Julia:See, I had potatoes. My babies were just big fat potatoes, so it was very, it was a very like we were like a picture in the Sistine Chapel for like a few months there. Thank you so much for tuning into another episode of Swiss Birth Stories. If you enjoyed today's episode, we'd love for you to subscribe to the podcast so you never miss an inspiring birth story or expert insight. Your support means the world to us and helps this community grow, so please also take a moment to rate and review wherever you get your podcasts. Your feedback helps us reach even more parents-to-be. Don't forget to share this episode with a friend or loved one who could benefit from it, and be sure to follow us on social media at Swiss Birth Stories for even more tips, resources and updates on upcoming podcast guests, courses and events. We'd love to hear your thoughts, questions and birth stories too, so feel free to DM us, fill out the form on our website, swissbirthstoriescom, or tag us in your posts. Until next time, keep sharing, keep learning and keep connecting with each other.
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