![]() ![]() 22, but they will likely induce me 2 weeks early, with the cardiac team waiting. I, of course, am worried sick over all of this and am trying to stay positive. seem to be saying that while it's a possibility for us, it's a small likelihood. test specifically for DiGeorge Syndrome? My docs. We haven't gotten an amnio yet, not sure if we will or not. We are also thinking of Children's Philadelphia. We live near Washington, DC, and plan to go to Children's National there. We have been researching lots so that we can make the best decisions for our baby regarding her care. My husband and I are worried, nervous, and anxious. I just saw your post, as our baby girl (I'm 24 weeks pregnant) was recently diagnosed with Taussig-Bing Anomaly this is a combination of heart defects: DORV (Double Outlet Right Ventricle) a VSD (Ventricular Septal Defect), coractation (narrowing of the aorta), and a few other mild defects. If you like add me as a friend and I can give you my personal e-mail. Please keep in touch and let me know if you need some one to talk to at anytime. ![]() There is a Yahoo group called 22 Central (this is for anything to do with the 22 chromosome), and on Facebook there are quite a few DiGeorge Syndrome Groups. ![]() Our pediatrician does not know much about the syndrome, so we have tried to do lots of research. When our daughter went into congestive heart failure I was in denial, but the Doctor's were on top of everything. I am sure that you already have a specialist of some sort, be sure to ask lots of questions. Just be sure to remember that there is a lot of frightening information out there and not all will apply to your daughter. She has been home with me fulltime since February 1 of this year and she has had no more than a cold. She was in daycare from the age of 18 months to 31 months, she was continually sick while in daycare (this included pnemonia and thrush regularily). We beleive that her immune system is compromised in some fashion. She gets all of her blood work retested annualy. Her calcium levels are fine as was the first level immune system testing. Within a group of her peers, you can see that she is a bit further behind, but she can communicate with us and so on.Īs for all of the initial testing. At 18 months she was considered to be special needs, but after 24 months she had come a long way. The 1st 6 months were the toughest on us. We are very fortunate, our daughter has done very well. I hope that I have been able to relieve some of the worries for you. If you would like to know anything else, I would be happy to chat with you.īest of luck to you and your family. Most importantly she is a treasure and we wouldn't trade this experience anything. Everything else has come along as it should, her speach is where it should be for her age, she is completely potty trained. Our daughter had motorskill issues in the beginning and did not walk until she was 19 months old. As for the syndrome there is a lot of information out there. She had open heart surgery, they repaired both holes and removed the Aortic Arch. She made it to almost 3 months old and then she went into congestive heart failure. She had 2 holes in her heart, and a valve that was closing off because of the largest hole, she too had an interrupted aortic arch. She was diagnosed with Digeorge Syndrome at 6 days old and confirmed through bloodwork at 10 days old. Our daughter was born at full-term 8lbs5oz. I am responding to your note regarding Digeorge Syndrome. ![]()
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