After 2 years of me taking my sweet daughter to countless ENTs and pediatricians, a pulminologist gave us an answer. She has a double aortic arch. The aortas are around her trachea and esophagus and she will have to have surgery for this. While the CT wa ran to find this they also did a MRI and found that she has tethered spinal cord. This will more than likely need surgery as well. Although I can't find anything on these two things being related, I still feel that there may be other things going on with her (possibly DiGeorge syndrome) and would like to have her chromosomes counted. My husband feels and some of the doctors we are seeing that we have the answers we need and should move on instead of ordering more test done on her. If I would have settled and listen to the first dr.s my daughter could possibly not be with us in a few years, so I feel like I should push this issue some more. But a part of me feels that maybe I want to blame her issues on a syndrome or disease rather than something I might have done while I was pregnant with her.
My questions are: Has anyone heard of Double Aortic Arch and/or Teatherd spinal Cord? And should I push to have more testing done? There is also a speech delay and some motor skill issues going on. Thank you for any help with this critical matter.
Mamma's instict alwasy outrules a doctors or daddy's opinion. Go get more testing if you feel that there something else missing. There is no harm done other than money. It's ALAWAYS better to be safer than sorry.
I have to agree with "MegandOllie", a Mother knows best! I am a mom of preemie twins, one of our sons has a narrowed airway caused by a titanium clip in his heart. We went through a lot to determine this, did a lot of research on our own and ultimately listened to the doctors. Although his situation is very different, we are very in tune with our children's needs from months in the NICU. My other son has hydrocephalus, and I struggle not to blame everything on his "head" (every fever, every headache) - so I understand both sides of your dilemma.
The only advice I can give you is ASK questions!!! And if you don't understand ask them again, or ask someone else. Try not to look for the worst, but at the same time, trust your instinct. And, write it all down! It's hard to get that 2nd chance in front of the doctor when you forget a symptom or question.
Praying for her strength (and yours!) and healing!
L.
Both problems are congenital disorders. Ask your doctor, "are these two medical problems unrelated? or is it possible that these are just symptoms of another problem, like a chromosome disorder, etc?" See what he says.
I am sorry you have to go through this. And I hope they are able to medically intervene early and that there are no long lasting effects!
Blessings to you and yours.
There's no harm in more testing as long as you're taking care of the problems also. If there is more to it, you want to know in the long run.
