New Baby On Its Way

My daughter, who passed away 2 years ago, has a best friend that is pregnant. (She is like one of my own) She went to the doctor and they found several things wrong with the baby's heart, and that it could have Digeorge Syndrome. I had no idea what this Syndrome was. My youngest daughter and I have been doing research on the Digeorge Syndrome. And we have been looking for people who know more info about it or have actually been threw what this new mom is going to go threw with having a baby that has Digeorge's Syndrome. If you have any advice for us or the new mom, Please share.

ConcernedFriends ConcernedFriends
46-50, F
4 Responses Mar 7, 2009

Thats my post above this one - must have rambled on a bit too much.<br />
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as far as expectations for a new Mom. Be strong, there may certainly be some hurdles to overcome but it can be done. Understand the disease as much as you can and know that there may be developmental delays (the keyword is delays). You sound like you truly care for this new Mom and that helps a ton!! Support is priceless when you are dealing with DiGeorge, especially if you are facing long and stressful cardiac surgery. Be there for her and give her all the support you can. We were fortunate to have a supporting family (and they continue to be) and although there were some VERY difficult days we survived and so did one amazing child!!

My son was born in 1995 with DiGeorge Syndrome. At first we did not realize there was anything wrong with him, he had a murmur but we were told it was most likely innocent. We had a really hard time getting him to breastfeed and he began to lose weight so we gave in to the use of a bottle. I can't recall now how many times we were in the hospital the first few months of his life, I think it was close to every other week. He would spike crazy high fevers (104-105) and get diagnosed with pneumonia each and every time. We ended up going in for a swallow study and they realized he was aspirating fluid every time we fed him - the reason behind the revolving door of admittance for pneumonia. It was during this time that his cardiac abnormalities were discovered and our whole life went in to a free fall. At 5 months he had surgery to repair a vascular ring and a coarctation of his aorta (a narrowing). ba<x>sed on what was going on with him (not all symptoms of DiGeorge are the same) we had a real struggle getting him off of a ventilator (about a month in the Pediatric ICU).but eventually his will to live beat everything out and we brought him home.<br />
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Every year we have a cardiology appointment and he has had to have angioplasty done on two occasions. His speech was delayed at first but he is doing great now. He struggles with keeping things in order (especially with Math) and school takes a bit of extra work but he has been passing (not an all A student but he passes - with special education help given when needed).<br />
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Our son is 15 now and lives a pretty normal life. He has some facial deformity (wider set eyes, low and rolled ears, and a narrow jaw) but they are not something that most people notice. He is the family comedian and makes all of us laugh on a daily basis. He does however really like to spend time by himself (we force him to spend family time). His personality is fantastic, he is pleasant, respectful, and a true joy to be around (and I'm not just saying that because hes my son). He is the first to make friends and his love for his fellow man is undeniable; which seems for a kid that likes to spend time at home all by himself. He is a sports fanatic and was cleared this year by his cardiologist to play football (although his Mom and Pediatrician were a bit iffy on the whole idea). <br />
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Our concerns now are geared more towards what he will do with the rest of his life. We are just starting to research what the implications will be for having kids and there is a fear of schizophrenia that looms over our shoulder at times (although we are hopeful he will not be in that category as he ages).

My husband & youngest daughter have 22q11.2 Deletion Syndrome(DiGeorge). My husband is pretty healthy with only a few mild symptoms. His biggest problem is he has anxiety, depression and anger issues. He don't always know how to talk to people without coming across sounding hateful....big problem! <br />
I doubt that he could live on his own and manage a bank account. He has problems managing time & money. <br />
My daughter has had 4 surgeries so far. She was born with 2 holes in her heart and had to have open heart surgery @ 4 1/2 months. She's had 1 surgery to remove fluid from her ears(she had so much built up and it was causing problems with her hearing). She's had 3 surgeries to improve her speech and mouth function. She turned 3 in Dec and is the size of a 18 m/o-2 y/o. She is about a year behind in speech also. <br />
She has some minor facial features, but others don't seem to notice anything other than her size...oh and her ears...they stick out a good bit. She's been in early intervention since she was 9 months and she will be graduating in May. We do not treat her any different than we would any other child. I created a site that she can join of she wants....she can get answers and compare our kiddos to hers.

My older brother was born with digeorge syndrome. I've read that the mortality rate is very high and most babies do not make it past their first year, but my brother is now 26 years old. His doctor now says he thinks what he has is "partial digeorge". I guess at the time he was born there was not a test that could give you an exact diagnosis on what he had, and there is one now but my parents don't want him to get it because of insurance reasons. My mom has told me that the first few years of his life were very hard on her and my Dad. He basically lived in the hospital, and there were several times he almost died. He had a problem with his heart as a baby, but no longer has heart problems as an adult. He was more susceptible to getting sick when he was younger, has asthma, and has a calcium deficiency that he will have to take medicine for for the rest of his life. He has different facial features, but not to the point where it is visibly apparent that he has a disorder, such as with a person who has downs syndrome. He is developmentally slow, he had a hard time throughout school, kids made fun of him a lot. He had a speech problem and was in speech classes when he was little. He didn't actually begin to overcome this though until I was born and he saw me start to talk and that's what really helped him my parents say. He has always been more reserved and shy, he doesn't open up to people too easily. His immune system is much better now as he is older, and he pretty much leads a normal life. He never excelled in school, but is currently attempting a graphic design program and works a full time job. He still lives at home, but pays for his own car payments and pretty much takes care of all his finances. I guess he's come a long way. I never saw him as different since I grew up with him from the time I was born, I know other people do notice though sometimes that he is slower. I know the medical bills were bad, and his illness when he was younger was very hard on my parents, but the fact that he is 26 years old now and at where he is, is a miracle. He has the most gentle soul and the kindest heart, I feel blessed that he is my big brother. <br />
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I don't really know what advice I could offer. I know my brother needed a lot of extra help, he still does with certain things. The first few years, from what I understand, are the hardest. I'd tell her to have patience, treat him/her as a normal child, get second opinions, ask the doctors as many questions as possible, and to pray.