Coarctation of the aorta

Not once have I ever heard of this until my week old daughter was diagnosed with it. On the 20th I took my daughter into the drs because she was breathing a little fast, the pediatrician sent us to Children’s hospital thinking she had a viral infection of some sort. At children’s she got hooked up to oxygen and they started running tests to see what was going on, one of those tests included an X-ray, in which they saw that her heart “looked large” so they went straight to doing an Echo. They found that she had sever coarctation of the aorta a large hole and a bicuspid aortic valve. Two days later she had open heart surgery, she was put on bypass and they went through her chest. The surgeon was able to fix the coarc and the hole but he said he wasn’t going to do anything about the bicuspid until very later in her life, as it isn’t a huge problem atm. We were in the hospital for two weeks, short in the long scheme of things but felt very long to us. Shes now home and healing and we are so thankful. I later found out that this diagnosis is commonly found at the 20 week anatomy scan and with how severe her coarc was it should of been caught either then or when she was born. I have been through all the emotions with that, anger it wasn’t caught and we could of been more prepared, thankfulness it wasn’t caught and she was able to learn how to eat which has greatly helped us, and sadness that if I hadn’t noticed the very small signs she may have passed in the night. So in light of all of this I just want to say don’t feel bad about calling your dr, don’t feel like you’re being over bearing or protective if you bring your child into the drs, if you have a gut feeling something is wrong TAKE THEM IN, don’t let mom guilt or shame stop you from making sure your babies are healthy. The day we were sent to children’s was the third time that week (she was only a week old) I had gone to the pediatrician. I felt so stupid walking in there the third time but I am so glad I did and didn’t let anyone stand in my way. I’m so glad I didn’t dismiss her small signals that something was wrong.

She’s still on oxygen but doing extremely well. I’m so thankful for the amazing drs at children’s. You can never be to careful with these babies .