Hello everyone, my husband and I are new to the site. On April 17th 2014 we gave birth to a baby boy 3lbs 15ozs , 16 inches long. He was born with a natural serk, small recessed chin, and thin ears, my husband and I thought nothing about it but the doctor decided to run genetic tests due to the three abnormalities . Little did we know that two weeks later our little angel would be dignosed with whs, we just looked at each other and was at a loss for words. I grabbed my phone and started looking up whs the more I read the more my heart broke, I cried and couldn’t understand how this happened to us and why? No one seemed to have any answers?. We have enjoyed each and everyone of your stories . We look forward to talking with each and every one of you.:) god bless
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Welcome! He is a beautiful little boy! Congratulations! We have been exactly where you are. It does get easier and you just change directions!
Hello, and thank you for introducing your new little one to us! He’s wonderful. Feel free to check out my blog about Fiona, who’s three. The language of the WHS descriptors in medical books still upsets me, but no medical book can describe the reality of the syndrome: the awesome, beautiful, unique, loving people we all know and love and raise. Best to you! Heather
Oops, our blog is: http://www.starinhereye.wordpress.com.
Your story sounds familiar. When Caroline was born we had no inclination that she had WHS. She was born weighing 5lbs 7ozs. We stayed in the hospital with her for 12 days and during that time she was seen by a geneticists that noted her “small, thin ears”, large eyes, and general small size. He wanted to run tests but all the doctors and nursery workers kept reassuring us it was just to rule genentic issues out and that they didn’t think anything was wrong. She was 1 month old when we received her diagnosis and it was a complete shock. I’m like you, as soon as I got home I started searching the internet for information and I just remember crying and thinking why my baby. The saddest part for me was thinking about all the things that she may have to miss out on in her life because she simply wouldn’t have the ability to do them. It still breaks my heart that one day she may see her big brother participating in something and she may not be able to. I will say that the first year seems to be the hardest, mainly because you just don’t know what to expect. No one can tell you what your child is going to be like, and that’s probably the best and worst part of all of this. It’s great because no one can put limits on them, but then the waiting and not knowing can be overwhelming at times.
Caroline is 13 months old now and she is the absolute love of my life. I remember thinking I would be sad that she wouldn’t be doing the things that other kids her age typically were, but honestly now it doesn’t even phase me. I just enjoy her as she is, and most of the time it doesn’t even occur to me that she should be doing so much more at her age. She is so playful and loving, and I know your baby boy will be the same way. I look forward to getting to know your family and reading updates and stories of your son along the way!
I just want to congratulate you on your beautiful addition and wonderful adventure. You’ll have your ups and downs, but more ups. Don’t let anyone tell you your baby won’t do this or won’t do that. Your baby will do what ever he wants to do when he’s ready and will surprise many doctors. Just stay positive and enjoy your bundle. You’ll be able to enjoy him as a “baby” a little longer than most others….just enjoy it 🙂
We are in the same boat! Our daughter Kayce was born on February 25th 2014. Once they noticed a few markers (wide-set eyes, small chin, high palette) they decided to do genetic tests. It took a little over 2 weeks to get the results back which were the longest 2 weeks of my life! I also searched google and saw things that broke my heart. The firs thing our geneticist said was to stop doing that! So far Kayce has amazed us with how well she is doing. We keep celebrating every tiny milestone!
Oh and GO CATS!
Thank you so much everyone for your kind words and support!! Baby casen is doing great right now..I will update anything and everything I can as it cones our way. I wish the best for all of you , your beauitful babies and your family’s.
Congradulations on the birth of your beautiful baby boy. I hope you will soon find that you have been given an extraordinary gift of great value. My daughter Rochelle is 34 years old now. Each year of our life together has been delightful and challenging. Rochelle has helped me become a better person. I hope we have many more years together, she still has a great deal of work to do on me. I hope your lives with your son will be as blessed and wonderful as my life with Rochelle has been.
Baby Casen is absolutely beautiful! Would love to hear all about how he’s doing. I share your wonders about “why.” It’s a question that gets answered for me a little more every day. Our Elsa has taught me to appreciate all of the gifts in my life — the challenges that we have faced have been substantial, but it always causes me to stop and take stock of what is truly most important in life. Something that I tend to forget all of the time. Elsa reminds me that life is a day-by-day adventure. And that it is silly to ever think that I can lead or control it! She keeps me in the moment and brings out my compassion and patience, when I think it’s dwindled away. Hope you post again soon!
A late congratulations from Sabrina and I in New Zealand, Cason is absolutely gorgeous!