Xander's Story - Congenital Diaphragmatic Hernia (CDH)
So much of our story is a blur. We didn't receive our diagnosis at 20 weeks like most families. There was no researching the best children's hospitals and surgeons or arming ourselves with knowledge before his birth. I had a very difficult pregnancy, with many trips to the ER and even a week-long hospitalization in my 8th month, but the doctors kept saying the baby was fine. They weren't sure why I was struggling. But all the tests and ultrasounds looked good. Xander arrived via planned c-section at 11:12am on February 24, 2011.
Everything seemed fine, and we were all settled into my hospital room to recover. It wasn't long before I started to feel like he was struggling. I didn't know exactly what was wrong - but I knew something was off. I called the nurses into the room twice in the afternoon/evening but they assured me he was fine. The third time I called, the doctor from the special care nursery came. She decided it was best to take Xander to the nursery, so that we could get some sleep, and they could keep an eye on him. I'm honestly not sure what time that was. But around 4am, she woke us up and told us that something was wrong. He had declined in the nursery, and they had taken him for chest x-rays. She said there was a hole in his diaphragm, and his intestines had moved into his chest, pushing on his heart and lungs. As we tried to process what she was telling us, she said, "These are the sickest babies in the hospital." That statement still echoes in my head. They found me a wheelchair and took me to the nursery to see him. He was already intubated, and I couldn't touch him. He and my husband were loaded into an ambulance and transferred to the closest hospital with a NICU. I had to stay behind. By the time I was transferred, Xander was already out of surgery, and we were told it had gone well. However, "well" is a relative term when you're dealing with something so serious. We were told to prepare for months in the hospital and lifelong complications. But that wasn't God's plan. We brought Xander home two and a half weeks later, and I am thankful every single day.
Xander is an amazing kid. He's smart, funny, compassionate, and kind. He loves to run, loves to be outside, and wants to be farmer when he grows up. We've had lots of bumps in the road with his health over these past seven years and most of the time, especially lately, I'm fully convinced that I don't have what it takes to be the mom he needs. I lose sleep doing research and going over symptoms and trying to make up for lost time, but I never feel like it's enough. I can't help wishing I had better information from the start. We would have done things a lot differently.
CDH is as common as spina bifida and cystic fibrosis, affecting one in every 2,500 babies, but many people have never heard of it. The diagnosis is terrifying and 50% of the families who receive the diagnosis lose their warrior babies. It's unimaginable. Those of us who bring our warriors home fight constantly to get to the right doctors, to get insurance coverage for the things we need, and to give our kiddos the best life we can. It's exhausting, and it can be really, really lonely. That's why it's so important to me that we raise awareness and support organizations who exist to educate, resource, and empower families.