My CDH warrior,James was diagnosed with a LCDH at an 18 wk ultrasound when the technician noticed that his heart was pushed over a little to the right side. In 1992 there was no internet to turn to to find out information. Our only resource was the local library. Needless to say there was not much information and what there was was very technical and scared us to death. We were living in a small town in Texas at the time and my OB said that we wouldn't be able to deliver our son in the local hospital that we would have to go to Dallas to deliver him. We were given I referral to a high risk ob in Dallas. That first ob suggested that the best option would be to terminate the pregnancy. We told him that that was NOT an option for us. We found another ob who was wonderful and never once mentioned terminating our son. He arrived in the world at 4:15pm on June 10,1992.
They immediately intubated him in the delivery room and rushed him to the NICU. I got a quick glimpse of his beautiful face as they rushed him by me. Not long after, they brought me consent forms to sign for them to do whatever was necessary to save his life. At approximately 8pm that night his organs began to fail and if it weren't for ECMO he would have died that night. The surgeon did his repair the next day. He came off of ECMO after only three days (the shortest amount of time up to that point for a CDHer). The neonatologist showed me an x-ray of his lungs and told me miraculously his left lung just opened up and he was able to be removed from ECMO. He remained on a ventilator for 17 days, then cpap, then just the nose canula.
He was breathing room air before long and after eight weeks was discharged and able to come home with us.
He did not need any oxygen support or monitors or even a feeding tube for when he came home. All of this was new and terrifying for us because we had 2 healthy girls at home.
James had feeding issues and massive reflux and needed a Nissen fundoplication when he was three.
He had respiratory issues and was hospitalized a few times with pneumonia and RSV. He needed another Nissen when he was ten due to going through a growth spurt and his first Nissen coming undone.
He has a slight learning disability but graduated high school with a regular diploma.