Ok so I am doing what I said I wasnt going to do any more. I have begun researching or looking up others info that they have found on DiGeorge..... So this is part of someones personal research... Most I already learned about.... First, if youre in my shoes and dont want to torture yourself with thinking too much, researching too much and really getting to knitty-gritty, let me say theres a women who runs a support group called 22Q And You, from CHOP (Children’s Hospital of Philadelphia) who is AMAZING and has 30 years of hands on experience with this syndrome. She is more informed than your doctors, pediatric cardiologists, genetic counselors and medical genetic counselors combined. She has numbers memorized and because she works so closely (and has for so long) with this syndrome, she is better at telling you what life is really like with a child with Digeorges. Plus, shes not biased in a pro-life or pro-choice way. Shes just a patient, matter-of-fact woman who will take an hour out of her day to talk to you, just to say, feel free to call back if you have more questions. a few of the dozens of questions I asked...not just of the gal mentioned above, but of all the experts I interviewed to make my decision. So, these are my hardest questions, summed up. 1. Can people with Digeorges and live normal lives? --Some people can, others cant. Depends on how severe the syndrome is. MOST will have major complications, see below. 1a. Can you predict how bad my child will have it based in utero? --Unfortunately, no. This means no genetic counselor, no ultrasound, no perinatologist, or pediatric cardiologist can paint a clear picture until the child is born. At that point they can see how bad the thymus, palette, and some other organ issues are but years will pass before the disabilities and mental illnesses will be full-blown and visible. 1b. Does the severity of the heart defect impact how bad the syndrome will be? --No, they are separate issues altogether. 1c. Will my child be the bubble baby who is always sick, in and out of hospitals and turns into a schizophrenic with adhd and a low iq? No one can say. While the odds of things going really wrong are MUCH higher when youre dealing with Digeorges, its hard to say what your child will be like. An iq lower than 80 is expected with this syndrome. A mental illness (or illnesses) is a very strong probably. 2. Can parents lose themselves and their joys in life by trying to manage all the physical and emotional burdens that go hand-in-hand with this syndrome? --YES, its not easy to deal with. This WILL affect the family, it is hard especially on the Mom. Its hard on siblings. You see high divorce rates with a special needs child, not just Digeorges. There are different degrees that people are affected by the syndrome but the most affected will have very hard lives--dependent on others after age 18, severe disabilities, severe psychosis, major health problems that prevent normal function in every way possible. The most affected often have the parents whose lives are most turned upside down. 3. What are the scariest parts of this syndrome? --High rates of psychosis. 1 in 3 will develop schizophrenia. 1 in 5 will be Autistic. 90% will have learning disabilities. Almost all will be socially awkward due to a gene that impairs the affected to read social cues from facial expressions. Most will have immunity problems, speech delays and significant heart defects. More than half will have failure to thrive with feeding issues in infancy.
Posted on: Mon, 18 Nov 2013 05:11:38 +0000
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