Hello! I’m 34 weeks pregnant with a little girl who was diagnosed with WHS at 24 weeks. We want to thank all of you who have opened your lives to us via your blogs. They were such an amazing help during the first few weeks after the diagnosis. Like you have all mentioned several times, the information given to us by our medical professionals painted a very bleak future. Your blogs and stories helped give us light. We have noticed that very few of you, if any, had the diagnosis of WHS before your little ones were born. We found her diagnosis by chance; check out our blog if you care to hear the story of how it came to be. We were wondering if there was anything you would have done to prepare for your little one’s arrival had you known. We are currently meeting with several doctors as well as a genetic counselor. We have toured the NICU and met with the neonatologist that will be taking care of her once she is here. However we are wondering if anyone has any advice. We are happy we know now before she gets here, but the waiting is hard. We feel like we are focused on the syndrome and not our baby girl since she isn’t here yet to focus on. We read the blogs and try to prepare for all of the medical issues she could have but there are such variations it’s hard to prepare for everything. Any suggestions, thoughts or comments would greatly be appreciated! Thanks again for opening your families to us. We truly appreciate it!
Thanks,
Hilary
http://iwontweargrey.blogspot.com
One more thing came to my mind – vaccines. This is only an opinion and not an advise. Denise used to get pretty sick after vaccines – fevers, colds, runny nose. This would have her lose her appetite and lose whatever ounces she had previously gained. If I could do this all over again – I would have spread the shots over longer period of time. We went with the regular schedule and gave her EVERY SINGLE one until recently. She’s basically pretty up to date with shots but I feel we could have done better. Just something to think about.
Hi Hilary,
My son was born with a cleft palate. I just want to reassure you that there are so many advances in medical science related to repairing cleft lips and palates and related to helping your baby cope with them. My son didn’t get his repaired til he was 1 year old and until then we had a difficult time with feeding him and there were ups and downs through the year related to the cleft, but the repair went fantastic and helped him so much. He had a special bottle called the Haberman through the first year, it was a great invention for Brodie’s case. We can stay in touch and I will answer any questions you have at any point. Congratulations on your baby girl, she is so blessed to have parents who are so dedicated to being prepared in every way to help her and who love her so much already!
LeeAnn
I think we are one of the “newest” members of the WHS club. Our son, Alexander, is now 4 months old. We were told it was probable at 2 days after his birth and given the final word at 10 days. We were told terrible stories and decisions were made at the NICU that I wish I would not have made. If I would have known about his condition prior to his birth – I would have first reached out to others. Most of the people on here we know and many of them we have met in person – so you are already on track! It was after listening to their stories and seeing other children that my husband and I began to realize how wrong the doctors were. So – if you have any chance to meet other families – do it. The real decision we made that I wish I would have done differently was to give Alex a g-tube. When his diagnosis was made, the doctors told us just to do it so he could go home. He now eats TOTALLY by mouth …. but – we don’t want to take it out in case he ever does need it. i just would have given him the NG tube to get nutrition and given him a chance to learn to eat. Now we have care of a g-tube we don’t use. If we would have known this was not common practice, we would have taken an ng tube and only put the g-tube in if it was necessary later on. I also decided to stop pumping when we were in the hospital because he couldn’t suck and I was in such a great depression. I became engourged and decided to pump until we were sure of the diagnosis. Here we are – 4 months later and i’m still pumping and very happy that I am doing this for him. There are so few things that i can give him …. just out of love for him. I’m truly glad that I pumped. Right now, he still eats by bottle because i strictly monitor how much he eats – but I LOVE the idea that I could nurse him if I decided to tomorrow. It makes a warm feeling in my heart. I would also tell you not to put too much stock in the deletion size. There are so many other variations. Alex had his first seizure at 3 months and has 3 heart defects, g-tube, tethered chord, cateract in his one eye, hypospadia…etc. and I just don’t think about it. A few more words of advice – if you need some help dealing with all of this- don’t be afraid to get it. I’m still taking some things for anxiety and I’m not ashamed. I will stop when I am ready – but for now it helps keep my worries in check. Also – our motto is: We WILL decide our treatment of Alexander based on his needs not on his diagnosis. When we meet with a doctor – one of the first questions we ask is: if you were meeting with a child who didn’t have 4P- … what would your advice be? that is usually the advice we take. (Our NICU doctors told all the other specialists not to treat based on his condition.) We do not believe this is true. We had Alexander’s cateract removed and a contact lens placed in and his tracking and grasping of objects has improved so much! Good luck. You guys are going to do great.