Today we met with Dr. S at Children's Hospital in Birmingham. She said they see around 15 CDH babies there per year, and that she and her four partners all have experience treating them. The surgeon we get depends on which one of them is on call at the time I deliver. James talked to one of the nurses afterward and she had good things to say about all five of the surgeons.
Dr. S said Claire will be born at UAB Hospital and stabilized in the NICU there, then transported to the NICU at Children's (a few blocks away). She will most likely need to be put on a ventilator as soon as she is born. Worst case she will need to be put on an ECMO (heart/lung bypass) machine. Children's Hospital has 5 ECMO machines, and one is always reserved as a backup.
After she is stable (at least 3 or 4 days, maybe longer) they will do the surgery. They will wean her off the ventilator as she can tolerate it (may take awhile). She will be fed intravenously until after the surgery and her intestines start working, then will have a feeding tube, then they will try bottle-feeding. She said the shortest hospital stay we can expect is 3 weeks (that's the absolute best case), but that the average is 2 months.
She couldn't really give us any specifics as to how severe Claire's condition was. So far the liver is down and her heart looks okay, but things can change between now and June, and they will continue to monitor her with ultrasounds. She said it is hard to predict how a CDH baby is going to do until they get here because there are so many factors involved.
We toured the NICU and there were two other CDH babies there. One was a 3-day old girl who had surgery this morning and was no longer on a ventilator. The second was a boy who has been there since November. He had been on ECMO and is still on a ventilator.
The sicker babies are assigned their very own nurse. The babies who are doing better share a nurse with another baby. There were 26 babies in there today and nurses everywhere. The NICU is open from 9am - 2pm, 5pm - 10pm, and midnight - 6am. Only two people may be at the baby's bedside at one time.
Everyone we talked to was really nice and answered all of our questions. We both feel very confident now in their ability to take good care of Claire there.