Milly’s CDH Story
My daughter, Milly, was born at 35 weeks at Derby Royal Hospital with a right-sided CDH. This was not detected during any of my scans, even though there were four signs at my 20-week scan that were missed.
A couple of hours after she was born, the doctors were still trying to stabilize her and gave us two options:
Turn her machines off
Try a little longer to see if they could stabilize her
Our answer was simple — keep trying until she was stabilized, because we were not about to give up on her. Eventually, they did stabilize her, and she was transferred to Glenfield Hospital in Leicester for surgery.
Her bowels and liver were in her chest, preventing her right lung from growing properly and pressing on her heart. Thankfully, she has no heart complications. She was on ECMO for 10 days at Glenfield before being transferred to Leicester Royal Infirmary.
Milly’s hernia had to be repaired several times because the material the surgeons used kept tearing. They then tried using pig skin as a patch, which also failed. Finally, they used a material similar to bowel tissue, which has now been with her for over four years and, hopefully, forever.
Because most of her bowels were in her chest, many of them had died. At that point, the doctors told us Milly had only a 10% chance of surviving. After that heartbreaking conversation, they decided to place her bowels outside of her body in a plastic bag for 24 hours to see if any movement would begin — and it did. In the end, 55% of her bowels had to be removed.
Milly was finally discharged from the hospital at seven months old. Not long after, I received a call asking for permission to include Milly’s story in a medical book, which I gladly gave.
Fast forward to today — she is now 9 years old, lives with right-sided cerebral palsy, and does not let it stand in the way of anything she wants to do.
