CDH Clubhouse - Congenital Diaphragmatic Hernia Support Group hosted by CDH International - Blogs

Originally Posted by Hope Siler

Hello Everyone,

I figured I would post our families introduction on this page even though I have been in contact with some of you for a while. Me and my husband Dalan live in Utah and we were planning on delivering at Mckay Dee Hospital, but soon found out we would be going to the University Hospital instead.

We found out at 20 weeks we were having a son and also there seemed to be a mass in his chest pushing his heart severely to the left. Our doctors said that because the mass was on the right side it didnt sound like CDH, they wanted us to come back a month later for another ultrasound so we did and after much discussion they decided to diagnose our son with RCDH which is more uncommon then LCDH. So we went for more testing at the University Hospital which included an MRI and a meeting with a pediatric cardiologist, after the results came back from both it was determined that davids heart was perfect (wonderful news after so much bad news) minus the fact that is was being pushed to the left. The MRI wasn't as good, our doctor told us that his LHR was a .5 and his small and large bowel along with part of his liver were in his chest, he was unsure of the outcome of babies with such a low number so he wanted us to have a meeting with a pediatric surgeon at Primary Childrens where david would have his surgery and a Neonatologist at the University hospital. Our meeting with the neo was a very sad one she gave david less then a 50% chance of survival from her experience with CDH babies and told us to prepare for the worst, something I know we should keep in our minds but it wasn't what I wanted to hear. She said that I would be delivering in one of there NICU rooms where they could just hand him straight from me to them, and that within 4-6 hours of his birth they would know if he would survive and if his one poor lung could sustain life, they said based on what they know now he is a candidate for ECMO. But every baby is different and they wont know untill they see him, Me and my husband are still unsure about ECMO for all the side effects that come with it even though I hear such great success stories of babies who have used it. We then met with the surgeon who said that if he makes it to him that the surgery would be very easy, even though he was uplifting and positive it was the "IF" in his comment that kept us down.
Thats when I decided to join this supportive group and get some real life answers, suggestions and great support for me and my husband. Because I know my son is a fighter I feel the fight in him everyday as he grows and I know he is not a number or statistic in a medical journal. Im going to fight everyday for him and make sure he has everything he needs till he gets here. And once he is here he will be in gods hands with so much love and support beside him I know he will make it.

Sorry this was so long, thanks for reading

Hope