Weston’s CDH Story
As a two-mom team, we were used to struggling to build our family. After a year of many failed attempts, we were over the moon to finally get a positive pregnancy test at home on Valentine's Day 2022. We were ecstatic to give our older child a sibling. We took a "babymoon" cruise shortly after announcing to our families. Life was great. We even announced it on social media while on our cruise! It was such a happy time in our lives. A couple of weeks after getting back from our amazing vacation, we had our 20-week anatomy scan. On June 14, 2022, we felt our world come crashing down. When our ultrasound technician left to get the doctor, I knew something was wrong. The doctor came in and took a look. He turned off the screen, and in a very serious tone, he told us the news. He proceeded to explain that what he was seeing was that our son's heart was on the right side of the chest when it should be on the left. We were given the suspected diagnosis of Congenital Diaphragmatic Hernia (CDH) and told we would have to follow up with the Children's Hospital of Philadelphia (CHOP) for further testing. We tried to ask questions. Will our baby make it? What is the survival rate? He couldn't answer anything. We left that appointment extremely upset and terrified as we weren't given any other information other than "it's very serious." We quickly found ourselves on the dark side of Google for the next two weeks. We assumed the worst as we read that 50% of these babies do not survive. I feared that I would never bring my baby home from the hospital.
On June 24, we had all-day testing at CHOP. I had to undergo hours of ultrasounds, an MRI, and a fetal echo. We were given absolutely no information until we met with the doctors in the afternoon.
After meeting with the team of doctors, the suspected diagnosis was correct. Our baby had CDH. However, the doctors were hopeful. In our case, our baby had only the intestines and spleen in the chest, and thankfully, the liver was down. They explained that there are three categories for CDH - mild, moderate, and severe. They said our baby was in the mild category and was given a 90% chance of survival. As horrible as a diagnosis as it is, we were quite relieved with the prognosis. We also felt extremely confident with all the doctors at CHOP, and it was an added bonus for us to live only about an hour away.
On October 10, I was 37 weeks pregnant and went for a regular checkup at CHOP. My blood pressure was very high, and I was showing signs of pre-eclampsia. It was quite a shock to be told we weren't leaving. I was admitted minutes later and induced a few hours after that. I had made very minimal progress over 48 hours. Our son Weston Brooks was born via c-section on October 12, 2022, weighing 7lbs 6 oz. He was put on an oscillator, and less than 12 hours later, he was put on a regular ventilator. Fortunately, he did not need ECMO.
Weston spent 17 days intubated and was on CPAP/oxygen for six more days until he was on room air. He had his repair surgery seven days after birth. Because the hole in his diaphragm was small, they were able to close it back together without needing a patch. He spent a total of 29 days in the hospital and came home on November 11, 2022. He did not come home with any respiratory assistance. Weston was already taking 90% of his feeds through his bottle and was able to kick the NG tube the day before Thanksgiving, about two weeks after being discharged.
When I tell people about his story, they are shocked that this is the same baby. He is a thriving, happy, and healthy little guy. Weston is a speedy crawler and pulls himself to stand. He just started cruising along tables and couches. Weston is extremely social, as he is always smiling at strangers. Some of his favorite things include watching Miss Rachel on TV, chasing after our dog, playing with cars, eating French fries, and laughing at his big brother.
We are forever grateful to the doctors and staff at CHOP for taking such amazing care of our boy. We still keep in touch with many of them and send pictures and updates.
We are also grateful to the Ronald McDonald House for hosting us. Being able to stay close to our son while I was recovering from my c-section was a huge blessing. They provided us with all our meals, and we never had any trouble catching the shuttle there and back.
Last but not least, we are so thankful for the Tiny Hero Foundation, as they sent us a CDH care package and even set up a phone call to check in with us and help answer any questions we had. We hope that Weston's CDH story can provide some hope and peace to the parents who are in the same shoes we once walked.
