Our baby was diagnosed with congenital diaphragmatic hernia (CDH), a serious condition where his diaphragm didn't fully form, leaving him with a hole in the diaphragm. This allowed his intestines, most if not all of his stomach, a portion of his liver, and (we later found out) his spleen. Additionally, he was born with a bicuspid aortic valve, and a variant of unknown significance of gthe chd7 gene, the gene known for causing CHARGE Syndrome, which my son does not fully qualify for.
Due to the CDH, my son's left lung is very small. His right lung is also on the smaller side and his heart was shifted to the right side of his chest due to his abdominal organs being in his chest.
At two days old he had his initial hernia repair. At about 9 days old they discovered he had reherniated and a portion of his intestines had been pulled through and developed necrosis. The surgeons repaired the hernia but due to his low blood pressure at the time they felt he wouldn't heal properly and he had to have an ostomy for three months until they later reattached his intestines.
After the third surgery we were concern with a few things that we brought up to the doctors but no one from the day team, who were also the decision makers, would meet both of us on our schedule which was after my husband got off of work. Despite our eagerness to go over our concerns to make sure he was truly ready to come home, we were threaten with CPS for abandonment had we not taken him home by the first thursday of September. So after their dismissive attitudes of our concerns, refusal to meet with us, and the threaten of taking our son away, I no longer trusted them with caring for him so I took him home.
Since being home we've had plenty of ER visits, some where he was admitted, once supplemental oxygen was administered (part of our concern was whether he was truly tolerating a complete oxygen wean and his feeds). He was having reflux induced breathing issues.
At the end of September he was found to have reherniated a second time. We spent about 5 days in the hospital while they ran tests and did scans and they still aren't fully certain whether his reherniation included bowel, a portion of his pancreas, or really even if he reherniated. Though they were acting as if her reherniated and it was his pancreas that had gone up. Due to them thinking its the pancreas that had gone up, they plan to have surgery in 3 to 6 months when he is older and bigger.
We called the Johns Hopkins All Children's Hospital in Florida for a second opinion. While we are waiting on a call back from the surgeons, their program coordinator didn't seem to see that he reherniated at all though she did admit that she wasn't a radiologist.
We are hoping not to do his care at the hospital we are currently seeing here in Baltimore and rightfully so, seeing as how they have treated us.
If we do need surgery we hope to relocate to a more reputable hospital that specializes in CDH. That would be Johns Hopkins All Children's Hospital in Florida, or perhaps the Children's Hospital of Philadelphia.
So please help us fund this relocation for his medical care and hopefully seek out legal advising for the current hospital we are at. With this many reherniations in under 5 months we suspect surgeon error or poor surgical skill.
Anything is greatly appreciated, Thank you so much.
