Ezekiel's Story - Congenital Diaphragmatic Hernia (CDH)
Tuesday 2/12, we found out that we would be having a baby boy!! By mistake…, the ultrasound tech left a gender photo on the strip of print outs we were given. We were a little upset that we had found out before our gender reveal, but still ecstatic about the news! When the doctor came in to speak with us all of that excitement was quickly taken away. She explained to us that during the ultrasound the tech had trouble getting all the views of our baby’s heart. They believed it was because of a hernia in the diaphragm that had allowed his stomach to move into the chest cavity. She then ordered some genetic testing and referred us to WVU Maternal-Fetal Medicine for an in-depth look at the situation. We had no idea what questions to ask. We are first time parents and up until now our baby had seemed perfectly healthy. The only question I could seem to come up with was “what am I supposed to ask?”
Over the next week, we had a pretty rough time. This is our worst nightmare. Never had we had our dreams crushed so fast. We now had questions, but most of mine couldn’t be answered by doctors, only God could answer my questions. We Googled what we knew and still couldn’t seem to find any more hope for our baby boy. The best odds we could find for him surviving after birth were 50%. Finally, we found the Children’s Hospital of Philadelphia website and their study on a fetal surgery procedure. There it was. The little bit of hope I needed to make getting out of bed in the mornings bearable. There was SOMETHING that could help our baby.
Tuesday 2/19, I woke up and just knew that we were going to get good news. Maybe this was a mistake. Maybe he was just being stubborn for the ultrasound and that’s why it looked the way it did. Maybe this wasn’t as bad as it seemed. Our entire day was spent at WVU Medicine for testing. We had a fetal echocardiogram to check to make sure that baby boy’s little heart was forming correctly. The cardiologist told us that everything looked to be good, but since he still had a lot of developing and growing to do, there was still the possibility of a hole developing. (Okay, we can work with this!) BUT, he definitely had a hole in the left side of his diaphragm, LCDH. (Maybe this isn’t as bad as it sounds....) AND his stomach is pushing his heart over, compressing it. (Still maybe not so bad.)
Next, we went for our ultrasound, but still didn’t have any answers until meeting with the obstetrician about all our test results. (Longest day ever.) While waiting for him, the doctor that had referred us called to let us know our genetic testing had come back. Everything they tested for was negative. (Best news yet!) When the obstetrician came in, he went over our family tree and any and all medical conditions we knew of. Then, he told us our worst nightmare all over again. Our baby boy’s stomach was definitely in the chest cavity and part of his liver. He gave us the same 50% survival rate for our baby. He explained that surgery would be done after birth to repair, but he just wasn’t sure yet how the baby’s lungs would develop with so much extra stuff in the chest cavity, there wasn’t much room. I left broken hearted all over again, because I had had this feeling that whatever it was, it wasn’t going to be that bad.
Later a Facebook friend of a friend told us her story of her CDH baby and how they found hope through Tiny Hero and a CDH specialist, Dr. Kays, at Johns Hopkins All Children’s Hospital in Saint Petersburg, Florida. She told us her success story and it was all I needed to convince me that I would be going to Florida to have my baby. Whatever it took.
April 2nd and 3rd we spent time in St. Petersburg, FL meeting with the CDH unit specialists at Johns Hopkins All Children’s Hospital. They were able to give us more answers and hope for Ezekiel. After another Fetal Echocardiogram, we were told that there were two possible small holes in his heart, but they saw no reason for major concern, if they didn’t close up before he was born, then he could live with them. We had an MRI and ultrasound and received those results from an in depth meeting with Dr. Kays. He told us that Ezekiel’s condition was severe. He had 20-25% of his liver up, as well as stomach, intestines, and bowel. Dr. Kays said there was an 80% chance that Ezekiel would need ECMO, a heart-lung bypass, that is the scariest thing for parents-to-be to hear. Our hometown hospital would give our baby boy a 40% chance with this knowledge. Dr. Kays, with the confidence of his team and himself, gave us a 90% chance! The best news yet.
May 20th, we packed up our things and traveled nearly 1000 miles to St Pete again, to prepare to deliver our baby. We had plans of delivering on June 18th, but after an ultrasound seemed to show no weight gain, just over 4 pounds and making him drop below the 10th percentile, and some hydrops, we scheduled a c-section for June 10th. Hydrops and CDH dropped our baby’s survival rate with Dr Kays to 70% and he would 100% need ECMO.
June 10th at 9:05 a.m. Zeke was born. 6 pounds 1 oz and no hydrops. At 7 p.m that same day he was put on ECMO. He stayed on ECMO for 10 days and was intubated for a total of 21 days. We thought the tough part was over, but then we had to teach Zeke how to eat and get him to volumes that would allow him to gain weight. We struggled with eating for almost 4 weeks before Zeke was given a g tube to help meet his feeding goals and had a Nissen Fundoplication to help with acid reflux. 11 days later Zeke was discharged from the hospital! We spent a total of 65 days in the hospital, but came out very much on top of CDH!