CDH Rollercoaster


I am writing here because I feel like I am out of ideas with how to cope. My son Elias was born on September 24th and we soon discovered that he had a congenital diaphramic hernia. This came as a complete shock to my husband and I as we had a normal healthy pregnancy. My son was immediately transferred to a hospital about two hours away in Detroit where he received a surgery to fix the hernia the next day. After the surgery he went 5 days without needing ECMO, however went into a slow spiral and was put on ECMO when he was a week old. He spent 5 days slowly weaning off ECMO and the moment he was scheduled to be taken offf and return to a conventional vent he had an unexpected pneumothorax (collapsed lung on his good side) that took us another two steps back. Then after that there was a clot discovered in the ecmo machine and they had to quickly replace-again putting our son through another trauma. Since then his oxygen levels have yet to climb and while he is stable for the time being the surgeons say there is a lot of damage to his lungs that must heal and the ecmo machine keeping him alive will also contribute to these complications the longer he is on.

I am sharing our story because I am having a hard time staying strong for my son. I sit in his room a nervous wreck hoping and praying relentlessly that his oxygen saturation will climb and that his lungs will heal. Every time I feel we make progress we are immediately kicked 3 steps backward. My husband and support system are being so strong and I wish I could do the same.

I feel like I am losing it and am so worried my son will not pull through and watching it slowly happen without any control is killing me. I am reaching out now in hopes that someone has any suggestions for how to cope or success stories that have come from the terrible rollercoaster that is CDH. Feeling desperate.