As my husband and I sat excitedly at my 20 week ultrasound, the sonographer said, “It’s a girl.” But, within a minute the excitement was gone when the sonographer excused herself from the room. Shortly after that we were told that our baby girl Maddi had a hole in her diaphragm, called a congenital diaphragmatic hernia (CDH). Your diaphragm keeps all of your intestines in your lower abdomen, so Maddi’s lungs and heart were being crushed by her intestines and would not form properly. Local doctors gave us a 30% survival rate and offered termination. We went home devastated, but I was not ready to give up yet. I went home and found out that the Children’s Hospital of Philadelphia (CHOP) specializes in this condition and does extensive research on treatment options.
We went for a day of testing and evaluation, and they determined that Maddi had a moderate form of the birth defect along with a small abdominal mass. They gave her a 90% survival rate if I was willing to move to Philadelphia before delivery. After several weeks of bed rest at home, I moved at 36 weeks into the Ronald McDonald House to be near CHOP. At 39 weeks, I was induced but my labor quickly turned into an emergency c-section when Maddi went into distress. She let out one little cry before being quickly intubated and sedated to protect her delicate lungs and heart. After two rocky days, she was stable enough for surgery and had her diaphragm repaired and mass removed at the same time. She spent the next month on a ventilator while her lungs and heart healed. There were many bumps along the way and a night or two we almost lost her but by month two she was off the ventilator and learning to eat. After 55 Days in the NICU, she was able to come home with a feeding tube and cared for at home.
The March of Dimes funded Nitric Oxide therapy research, which was key to Maddi’s survival. Nitric Oxide was used to help treat the damage to her lungs and without this treatment I am not sure that she would be here today. Ten years ago when this treatment wasn’t available, babies with her condition had very poor outcomes, and those that did survive had terrible damage to their lungs. It is my HOPE that in the future all babies will be born healthy and other families will not have to go through the struggles that Maddi and our family went through.
We have had amazing support from our family and friends. Although it hasn’t always been an easy road, today Maddi is a happy 5 year old attending kindergarten and is thriving!