Had a little girl 8 weeks ago 7 weeks early and currently shes still in neonatal intensive care with digeorge syndrome,
Is there n e 1 here who has experienced this? and what i have to expect with her?
Hi! My grandaughter was born almost one year ago. She has digeorge also. She had to have two surgeries to repair her heart. Does your baby have heart problems? We are in texas. What state are you in? I’m always curious as to where others are. We haven’t met anyone yet who has di george. How is your baby doing now? And are you getting good info from the hospital?
When my daughter was born (5 weeks early) and she was hospitalized for her first 6 months (without heart issues). We didn’t know she had VCFS/22q11 until she was 2 1/2 yrs old. She is now 13years old & doing very well.
One of the best things you can do is educate yourself & your doctors about this syndrome & get to know your child’s individual issues (there is so much variability). The VCFS Educational Foundation www.vcfsef.org has just put out a new brochure that you can request FREE to share with family/friends and the professionals you are & will be working with. To get the brochures, contact Nancy Robbins at nirobbins@aol.com.
This is one of the most common syndromes (that no one has heard of) but we are working on it! You are not alone!
Take care
Lisa J in MA
Hi there,
My son was born 8 weeks preemie, with Tetralaogy of Fallot (hole in his heart, narrow pulmonary arteries). He was diagnosed with DiGeorge when he was 9 months old. He is now 9 years old, very social, and a boy all through. He has been through much therapy - speech, occupational, physio, early childhood intervention. To look at him, one would not realize he has challenges. He has very strong emotions - both positive and negative.
Because there is such a huge variety of symptoms and a large range of affected areas with DiGeorge, it is really hard for anyone else to tell you what to expect with your daughter. My experiences may be similar or completely different than yours. Probably the biggest challenge for me was just not knowing, and not being able to predict what was going to happen with James. Even now, it is not predicatable whether he will be self sufficient as he gets older, whether he will be able to hold a job, care for himself, finish school…all the things that other parents take for granted as things that will naturally occur.
The best thing you can do for your child, in my opinion, is to get her involved in as much early interventionas possible - speech therapy, physio, and anything else you can receive services for. My son was very delayed in speech, and sign language REALLY helped him to express himself, alleviating a lot of his communication frustration.
Also, try to find a support group for yourself, and educate yourself as much as possible about the syndrome - knowledge is power, and will help in the long run. Above all, take care of you - I’m not going to lie and say it’s an easy road - it has been my biggest challenge ever. I spent a lot of energy in the beginning wondering why, how, etc… it really doesn’t matter…do the best you possibly can, and if you stumble, brush yourslef off, and get on with it.
If you want to talk further, my email is jll1403@hotmail.com.
Josephine
Vancouver, BC, Canada
Hello!
I hope your daughter is now doing well . I had a son around the same time as your daughter. He was born in October last year.
He was diagnosed with 22q11 when he was 2-3 mths old.
He has a laryngeal web , some immunity issues . He doesn’t have any of the facial features, he did have a small vsd that closed on it’s own.
He is doing well in general other than the web, which causes him breathing difficulties. He will be having that lasered in August. I am hoping that solves alot of the problems for him.
He is sitting up much better now, still a little wobbly , but is improving every day. He can now play with toys infront of him while sitting, though if he looks to the side or behind him suddenly, down he goes!
He isn’t crawling, he doesn’t try to get up on his knees at all. Now when he goes on his tummy, he just rolls himself over now onto his back.
Like the poster above stated, it’s so hard for anyone to tell you what you can expect with your child developmentally. There is so many variances among individuals. Some people don’t even know they have it, and my ped is convinced there are many out there walking around who have no idea they have it.
I know how hard it is though, when you are so worried about their future, you just want to KNOW. And stop worrying, stop thinking the worst. Even the genetic counsellors couldn’t and wouldn’t tell me , not even give an ‘opinion’ based on their experience when I told them I wouldn’t hold them to it!
All I can do is give him every opportunity I can for him to be the best he can be. I want so much for him though…
For anyone living in Utah. We have a support group for 22nd chromosome syndromes. It’s very broad as of right now nut we would like to be a resource to families. Please feel free to pass this information along. To contact us send an e-mail to q22.deletion@yahoo.com .
Cassaundra