Teddy’s CDH Story
After multiple miscarriages, we found out we were expecting our third child. We were overjoyed that this baby was “sticking” and couldn’t wait to expand our family. At my 20-week ultrasound, the doctor quickly told me she couldn’t get a good view of our baby’s heart because the lung was blocking it. She referred me to MFM, and I asked if something was wrong. She just said she didn’t know. The next day, I was scanned by an MFM doctor who asked me why I was there. I told her the doctor could not view the heart, and she realized the doctor had not disclosed to me what was in my after-summary notes, which included “possible CCAM.” The doctor described the condition to me and gave me a good prognosis after a lengthy ultrasound scan and measurements of the suspected CCAM.
After the scan, I quickly called the supervisor of the OBGYN asking why the doctor didn’t tell me what she had suspected. There was no explanation, so I decided to leave the practice. Thank God I did. I went to an OBGYN practice where my sister was a labor and delivery nurse and was scanned for a third time. This doctor came in looking concerned. He said, “Your baby has a CCAM, but I don’t think that’s all that’s going on. The lungs and heart are shifted, and I think this is something much more significant.” He described Congenital Diaphragmatic Hernia (CDH) to me and said some people may opt to terminate the pregnancy because I wasn’t at the gestational age of viability yet. I was 23 weeks pregnant. The walls closed in, and I sobbed and said absolutely not. I then called my husband to talk with the doctor. He referred us to the Children’s Hospital of Philadelphia.
We went through all the prenatal testing, and they found our baby to have 19-25% right lung volume with liver, intestines, and gallbladder up. I just kept waiting for them to tell us our baby wasn’t going to make it but they seemed hopeful.
At 38 weeks and 5 days, Theodore “Teddy” Hassett Reed was born at the special delivery unit at Children’s Hospital of Philadelphia. After 30 hours, his blood gases indicated he needed to go on ECMO life support. While on that support, he endured 3 circuit changes and a blood infection. He was repaired on ECMO- which is extremely risky. His ECMO line clotted at the end of the surgery, and they ended up having to take him off the circuit. Miraculously, he was able to breathe and support himself without the life support. It was a true miracle. He then spent another week intubated and flew through his respiratory support. At 5 months on the dot (153 days approximately), Teddy came home with an NJ tube and no oxygen. Tiny Hero was a lifeline for me during our NICU stay, and I’m so happy to share our story to encourage other CDH families!
