Riley’s CDH Story
At 12 weeks pregnant, my consultant saw what appeared to be fluid on Riley’s lungs. By 16 weeks, it was clear that something wasn’t quite right. I was sent for an MRI, where we learned that Riley had been diagnosed with left-sided congenital diaphragmatic hernia (CDH).
Riley’s CDH was severe. It affected not only his left lung, but also his heart and right lung because his liver, stomach, and kidneys had moved into the space where his left lung should have been.
At 20 weeks, I was referred to King’s College Hospital in London for a procedure called fetal endoscopic tracheal occlusion (FETO). While I was still pregnant, doctors placed a balloon in Riley’s airway to help his lungs develop. Because of his CDH, Riley was also unable to swallow the amniotic fluid properly, so I had to have multiple litres of fluid drained throughout my pregnancy.
Before the procedure, we were told Riley had around a 10% chance of survival. The procedure gave him a 50/50 chance.
When I reached 30 weeks, I had to make the difficult decision to move to London because the procedure could cause early labour. At 32 weeks, my waters broke, and the doctors worked quickly to prevent Riley from arriving too soon.
The following day, they attempted to remove the balloon from Riley’s airway, but the procedure was unsuccessful and caused my contractions to start again. They waited another three days, and this time they were able to successfully remove the balloon.
At 34 weeks, Riley made his appearance via emergency C-section. Unfortunately, I have very little memory of that day, which is something that has been heartbreaking for me.
Just two days after he was born, Riley underwent surgery to repair his CDH. Two weeks later, we learned that the repair had not worked, and he needed another surgery. This time, the surgeons had to make a larger incision from his left side down toward his belly button.
After 10 long days, I was finally able to hold my baby boy for the first time.
In many ways, I felt like I had been robbed of the moments I had imagined having with a “normal” birth—the first time holding my baby, those precious early days, and so many memories I had dreamed about throughout my pregnancy.
After just over a month in the neonatal unit, Riley was finally strong enough to come home.
Today, Riley is almost 2 years old. Looking at him now, you would never know everything he has been through.
His journey has been filled with uncertainty, difficult decisions, surgeries, and long days of waiting. But Riley is here, growing, thriving, and showing us every day just how strong he is.
