Rowan’s Breath of Hope: CDH Travel and Medical Expenses

“Incompatible with life”

Three words we will never forget.

On Friday September 29th, 2023 Stephanie and I had our 20 week anatomy scan.

This was suppose to be an exciting day, filled with plenty of ultrasound pictures and getting to see how big our baby had grown.

This would be the day that we would finally announce that we were having a healthy baby boy.

Up until this ultrasound we had done everything right. We had found the perfect donor after 2.5 years of searching. Our first IUI procedure worked. All genetic testing came back absolutely perfect, all blood work, all prenatal appointments were perfect, and our little boy was starting to get super active. So, everything seemed to be on track!

When our technician called out my name, Stephanie and I excitedly followed behind, not expecting the freight train that would soon hit us.

The technician began our scan, we could see our little boy on the screen, kicking his legs, playing with his hands and his little mouth opening and closing as if he was in there having a conversation with himself, and so we all laughed about how he must take after me.

That’s when the tech turned the screen. The questions “what’s your due date, who gave you that date, how did they calculate that date, were you an IUI or IVF?” came like rapid fire.

We answered each question, thinking it’s okay maybe he’s just measuring small today, when the tech stood up and said, ”hold tight, we need to switch rooms.”

We both knew right then and there that something was wrong. Without even having to be told, we were already filling up with tears and felt sick to our stomachs.

A few minutes later and our tech came back and told us to follow her to our new room.

The silence as she scanned our little boy was deafening.

Steph asked a few questions as she was scanning and there was zero response.

Finally, the technician broke the silence, turned the screen and said “here’s his feet, here are his hands and little fingers and here is his side profile and his little nose”. She then told me that she was going to get me to lay on my side to see if she could get him to move and get us some better pictures.

After she had me on my side, she told us to give him a few moments to move and that she would be back to check on us.

What felt like an eternity passed. Finally, the door to our room opened and a doctor who introduced herself as the radiologist on call entered.

I guess there was no nice way for her to put it, but as she sat down she said “I have some bad news, and I’ll show you what I mean in a minute. But unfortunately your baby is incompatible with life”.

She told us that his left diaphragm did not fully develop. As a result his organs were entering his chest cavity, restricting his lung growth and had pushed his heart to the right.

She was able to see on the ultrasound that his kidneys and bladder were still in his stomach area, but without an MRI she could not determine what other organs may have entered or what percentage of lung tissue had been able to develop.

She assured us that this was not preventable. That it’s not genetic and in her words “just pure shitty luck”, as it only occurs in 1 out of 2500-3000 (0.0004 - 0.0003%) of pregnancies.

At this point what we do know is that our little boy has what is called left sided congenial diaphragmatic herniation (CDH). There are no CDH specialist teams in NL and we will likely have to travel out of province for delivery and several months in the NICU. We know that once he is delivered, he cannot breath on his own and will need to be intubated until they can perform his surgery to remove his stomach contents from his chest cavity and repair the diaphragm. However this comes with its own risks.

We are now deemed a high risk pregnancy and will be required to attend appointments every week in St.John’s to track our progress - and that’s only if the results from our Tuesday and Wednesday appointments allow us to proceed with the pregnancy. If not, we have a very difficult decision ahead of us.

As you can imagine we have a million questions, but will not have any answers until next week.

As of now we are scheduled first thing Tuesday morning for an MRI. This will tell us how much lung capacity that he has etc. and the severity of his CDH.

Wednesday morning we have multiple appointments with the genetics department, the fetal assessment team/ high risk OGBYN and likely our fertility specialist.

As you can imagine this has been an extremely emotional and difficult time for us. So I apologize for all the unanswered messages, calls etc. but we have been trying to process how we even got here. How we went from a perfect pregnancy to a baby deemed “incompatible with life.”

Please keep us in your thoughts, prayers, wishes, etc. whatever you believe in, whatever you think will help. Because we sure as hell need it!