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16w Fetus Has CGD Hi, everyone, My name is Grace, from Taiwan, now carrying 16 week-old boy baby, who has just been diagnosed with CGD according to CVS (Chorionic villus sampling) result, where my doctor found that the baby has no gp91, as same as my first boy, who passed away when he was 1y8m. Yes, I am a CGD carrier, and I hate myself passing this faulty X onto my two boys. I am wondering if I can ovulate a good X or not. Why it never happened to me. My doctor says it's a matter of 50-50 chance. However, I found many carrier mothers have 2 CGD sons out of their 2 or 3 sons. It seems faulty Xs are much more than good Xs ovulating out. It so depressing. I am really afraid of my next pregnancy. Does anyone can tell me there are lucky carrier mothers don't have CGD boys? I need some encouragement. Aftering reading most of your stories about CGD, it really gives me hope that my son could be relatively healthy without NUMEROUS INFECTIONS after he is born, but I don't dare to believe that wil happen. A CGD baby is destined to struggle to live, and one one can garrantee if the baby can go through and survive. I would not like to see my boy suffer from this terrible disease. Your any idea would be very helpful to me. Thank you. Grace
Submitted by grace on Tue, 2007-07-17 00:14. categories [ General Discussion ]
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 Hi Grace, We spoke via email and I just saw your post here. And yes, I am a very fortunate (I choose blessed) to have two boys that are aged 19 and 17 that do not have CGD and a daughter that is 16 that is NOT a carrier. My little guy that you see here is 5 and does have x-linked. I didn't even know I was a carrier until he got sick at age one. Since one, he's been well up until last fall... with an infection in his neck. His life is incredibly great quality. Know that I'm always here if you need an ear. :) Connie One day at a time.... and smile. :)  Grace,
I can't tell you how sorry I am about your first son and your devistating loss. At this point in your pregnancy, your are already at an advantage with a diagnosis, something your first son didn't have.
Our son (diagnosed with CGD at 2) lives an amazing life, with daily medication and some minor limitations, he is doing great. He has been infection-free since he started his medications, back in July '05.
It's understandable how frustrated you must be. But it's not hopeless! Please know that we are all in this together.
In appreciation of each and every healthy day, Marty Cowan
(Clayton's Mommy)
Thank you, Clayton's mom. Yes, you are right. It's not hopeless. What if he will be quite healthy, and I don't even give him a chance to live? I've been thinking for long in the past 4 weeks, and also went on the old version CGD Cafe forum to see how other CGD families have been through and now have a quite healthy and normal life. Now my unborn baby is nearly 20 weeks old, he is starting kicking, and I've made up my mind to give him birth. However, I am still frustrated about giving him medication and gamma shot immediately after he is born. He might consider life a sort of suffering of these stuff, and not as wonderful as others'. I am also curious about some CGD patients have never had severe infections during babyhood until teenhood. Does it mean that every CGD patient has more or less different level of immune system, some are quite healthy, some are always sick? One more question, is it ok to breastfeed a CGD baby? I mean I am not sure if the nipples are always clean enough. Any input is very appreciated. Thank you. Grace,
Thank you so much for your reply. I haven't logged on in awhile so I'm just now getting your message. I'm so glad to hear the baby is kicking! That is wonderful!
The daily medications Clayton takes are routine, and the shots are still no fun, but last only a second and he goes back to playing. The needle is very thin and mostly painless. I think it's the idea of it that scares him the most. Some shot days are better than others.
I nursed Clayton for six months. He was almost three when diagnosed and I never cleaned myself before nursing. If I had known he had a compromised immune system I would have but it wasn't an issue at the time.
Keep me posted on how you and the baby are doing, you are in our prayers.
When the baby comes, please post a photo!
In appreciation of each and every healthy day, Marty Cowan
(Clayton's Mommy)
My mom is a CGD carrier and I have 2 brothers. 1 died at 17 months old and 1 is absolutely fine, no CGD. Both were nursed. I'm a CGD carrier with 1 son and 2 daughters. All were nursed. My son does not have CGD. 1 daughter is a carrier, but her NBT is under 4 so she has been sick and is treated as if she has CGD. I don't know about the risks of nursing, but here are my thoughts. You can clean a nipple, express a bit of milk to clear the milk ducts, and there is no formula made that supplies the protection of colostrum. Colostrum contains large numbers of antibodies called "secretory immunoglobulin" (IgA) that help protect the mucous membranes in the throat, lungs, and intestines of the infant. Leukocytes are also present in large numbers; these begin protecting the infant from harmful viruses and bacteria. Ingesting colostrum establishes beneficial bacteria in the digestive tract. What I do know is 40 years ago babies with CGD rarely saw a 2nd birthday. When I look at the members of this community I see a lot of children and young adults who live with CGD, play, sing, make friends, go to school, marry, work, have families.... and take medication, are careful, and still get life-threatening infections and sometimes die. My baby brother is still part of our family, we still have memories, tell stories, and wonder about what if.... My daughter is amazing. I love her and hope for her and fear for her and have learned from her that life is a very fragile gift that we never really own or control; we can only celebrate and share it with faith and courage.
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Hello Grace,
I am a 37 year old x-linked CGDer. I know how devastating having a child with an illness is and I want you to know I'm thinking about you. However, although scary and difficult, your child can live a very normal life. The child years are more difficult as the immune system still forms and grows but things will improve and he will have a good life. Myself, I am a college graduate, married and have two beautiful children. My life has been hard but good and I am a blessed to be on this earth. In all this, do not blame yourself for bringing this to your child. CGD people are the strongest people you will ever meet and your son will teach you more than you know about life and love. If you have any questions about CGD or his health, or questions about meds, or anything, please do not hesitate to contact me at any time.
Robert
410-766-0327
robertisnow@gmail.com