My baby was born without lungs. Now she is fighting for life.

**Trigger Warning: This is a very graphic post about birth defects.**<br><br>There are times when we all experience “slivers of darkness”. For us, this started unexpectedly in July 2022 when my wife’s pregnancy went from perfectly normal to the unthinkable. My wife (now 8 months pregnant) was rushed to the hospital with severe abdominal pain. She had a sudden rupture in the amniotic sac. Our unborn baby had a rare congenital diaphragmatic hernia (CDH). For us, we didn’t even know this existed and certainly didn’t know it could affect our otherwise perfectly healthy pregnancy. Eight months of anticipation was suddenly replaced with stress and uncertainty. After all, how many parents have a normal pregnancy shattered by a random birth defect? How many parents have to watch their baby struggle for each new breath?<br><br>For us, it started with bad, then worse news. Preliminary ultrasounds indicated that our baby had a diaphragmatic hernia (CDH). We were told this meant some portion of her intestines migrated into her chest cavity during gestation. Unfortunately, her body mass was pushing her intestines up into her chest cavity, which in turn was also preventing her lungs from growing. This meant she’d struggle to breathe once born. <br><br>Then it got much worse. Our local OBGYN ordered an MRI to better understand the defect. The MRI revealed the unthinkable – our baby’s lungs were “severely hypoplastic”. Essentially, her lungs did not develop. We were told that the intestinal migration had fully occupied her chest cavity and there was virtually no lung mass. To say the least, we were devastated. Our previously happy pregnancy was now a desperate fight for life.<br><br>Our local hospital referred us to a hospital with a pediatric cardiothoracic surgery department. After additional ultrasounds, MRIs and other tests, they confirmed the congenital diaphragmatic hernia. They told us the hernia was on the left side of her diaphragm and that her stomach and intestines had migrated into her chest cavity. Her chest cavity filled with intestinal mass was preventing virtually all lung development. We were also told that her heart was “compressed by the mass” and had migrated to the right side of her chest. The hospital provided the same devastating news – our baby’s lungs had not developed and she was not expected to survive. <br><br>The hospital also “offered” the unthinkable – “termination of the pregnancy”. We refused. How could we end the life of our otherwise healthy baby girl? <br><br>We then sought a second opinion from a leading children’s hospital. After several assessments and meetings, we were provided a slightly better prognosis. We were told that because her lungs had not developed she would not be able to breathe on her own. The good news was that she was a candidate for ECMO and a “bridge-to-transplant”. For us, this was the first glimmer of hope. That being said, we were warned that even with ECMO and a lung transplant, the mortality rate was exceptionally high.<br><br>We were induced at 37 weeks and our daughter was born by C-Section. An immediate x-ray confirmed bilateral hypoplastic lungs. Her lungs were described as “stringy, small and underdeveloped without any of the typical spongy features. We were told that her left side diaphragm had failed to close and that her intestines had migrated into her chest cavity. “There was virtually no lung mass visible on x-ray”. An additional x-ray the following day confirmed that there were, “no gas pockets in the lungs”. Our daughter was put on a ventilator immediately. After spending her first month in the NICU, she is now placed on tracheal ventilation. <br><br>Unfortunately, this is only the beginning of an incredibly long journey. My wife and I have been told that our daughter will require a minimum of two lung transplants – the first at three months and the second at three years. We were also told there is a strong possibility of additional transplants throughout her life. <br><br>To our surprise, over 1% of all births are affected by congenital diaphragmatic hernias. Most have survivable amounts of lung mass, so our situation is particularly dire. We were also told that bilateral hypoplastic lungs are extremely rare. This is well beyond my ability to comprehend genetics and growth in the womb, but her diaphragm failed to form on the left side – a process that should have occurred at day 35-48 in gestation. Had this occurred, air sacs would have developed into full lungs.<br><br>Now, I can only watch in horror as my baby “fights” to gasp for each new breath. I look at her tiny one-inch nose with a ventilator and fight back tears wondering how she’ll ever breathe on her own. Every time I feed her, I watch the waves on her breathing monitor – “breathing” by way of a machine. I can’t look at her without tears. That being said, I’m trying to balance this with the reality of life. After all, she will not fight for life if we don’t. <br><br>There’s also an awful financial element to this. We were told that her current month in the NICU will cost over $100,000. After that, we have three months of ECMO. That will be another $700,000. Surgery for the transplant itself is expected to be at least $1 million. An additional several million in costs will follow for life-long care. The real kicker – we live outside the US. Essentially, we’ll need to raise $3 million to $5 million for life-saving medical care. I’m sure there’s government help, insurance claims, etc – but I’m absolutely terrified that even with all of these, we’ll struggle to meet our financial burden. <br><br>As a parent, I look at her tiny arms, hands, fingers, nose and mouth and cry. At what point did something go amiss in her development? I can’t look at her breathing monitor without choking back tears. How can this happen? A baby girl that was otherwise healthy was born without lungs. It simply makes no sense. <br><br>If you’ve had a child with congenital diaphragmatic hernias with hypoplastic lungs, please reach out to me directly. <br><br>**TL;DR:** Baby girl born with CDH and no lungs.