Salem Joy's CDH Battle

At our routine 20-week anatomy scan, the technician and doctor noticed some abnormalities with our sweet baby, Salem Joy. There were some uncertainties involving the diaphragm, heart, and stomach. After being sent directly to Maternal Fetal Medicine for a follow-up ultrasound, it was confirmed that my sweet baby has a congenital diaphragmatic hernia (CDH) which is where part of her diaphragm didn't close properly, leaving a hole that allowed her stomach and part of her liver to migrate into her chest cavity. 30 to 50% of the time, there are other genetic abnormalities while other times this just happens for no known reason. Other organs, such as her heart and lungs, are impacted due to not having the proper room needed to grow. As of now, Salem has been classified as severe.

After an uncomfortable amniocentesis and a long week of waiting for the results, we discovered Salem has a genetic anomaly called Mosaic Turner Syndrome. This means that not all of her cells carry the XX chromosome. Some cells have the XX chromosome, while others have just a single X chromosome. Like any genetic anomaly, the possibilities of what that could look like are numerous. For now, the main concern with this, in addition to her CDH, is that her heart is healthy and has no defects that haven't been discovered yet. We have had an in-depth fetal echocardiogram, but the results were not definite. Salem may have a ventricular septum defect, a hole in the wall between the two lower heart chambers, but we will not know for certain until delivery.

We have been accepted into the CDH program at the Center for Congenital Diaphragmatic Hernia at Johns Hopkins All Children's Hospital in St. Petersburg, Florida. Dr. Kays and his team have a survival rate between 90-95% while the national average still hovers around 50-60%. We are immensely blessed to be accepted into this program, but it does present challenges of its own.

Dillon and I will have to maintain two separate households during this time, which could be anywhere from a couple of months to half a year or longer. I stay at home with our children, who will be making the journey with us, and Dillon will be taking unpaid time off of work to be with us for a few weeks.

If you feel called to donate, we would greatly appreciate any support. If you're unable to contribute, we ask that you still keep us in your prayers during this incredibly difficult time.