My name is Laurie, and my daughter Kaylee was born on January 16th, 2010. Despite having an amnio at 18 weeks and weekly monitoring with sonograms and dopplers, we did not know of her diagnosis until after she was born. The first few months were very difficult for my husband and I as we came to accept the meaning of what the diagnosis would mean for our daughter and our family. However, at 3 months, Kaylee is far surpassing anything we had read or heard about her condition. She is tiny– her head alone fits in the palm of my hand– but she is hitting her milestones on time so far, and gratefully, her health has been good throughout the winter months. I am so glad that my husband and I were able to find a support network of WHS parents to reassure us in those early days that the research was outdated and pessimistic, and that Kaylee would do many things that we feared she wouldn’t do. They were right, and I couldn’t imagine my life now without my little jellybean.
You can read more about our journey since Kaylee’s diagnosis on my blog: kisses4kaylee@blogspot.com
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HI Laurie, Thanks for posting!
Kaylee is beautiful and I hope that the rest of us will be able to give you guidance as you learn more about WHS.
Hi Laurie
My name is Delphine. I’m nearly 6 months pregnant. My husband and I have just received the amnio’s results: WHS…
I m french (sorry for my bad english…)and the doctors are very pessimists about our little girl…We have the horrible choice to interrupt my pregnancy or not…
Your little angel’s story give me so much hope…
Thanks
Hi Delphine,
My son Frank is 8 months old and has WHS. We did not have his diagnosis until after he was born, so we did not go through the same situation you are in. However, I would encourage you to keep reading real-life testimonies of what these kids are doing and how happily they are living.
As much as possible stay away from the medical sites, which unfortunately are not as accurate with current information as they should be. This website is a great place to find stories from real people loving and enjoying their Wolf-Hirschhorn children.
You have every reason to have hope for your daughter.
You may contact me personally if you would like,
hkwhite@comcast.net
Hi Delphine,
I do not envy your decision– only you and your husband can make it. I can tell you that Kaylee is just the sweetest little girl. I know that the road will be tougher than I wanted for her– and us– but there is an incredible support network of parents here and online that will reassure you that if you decide to carry to term, that child will be loved by many and exceed all expectations.
I am always here if you wish to talk further.
Love,
Laurie Hunter
Thanks a lot for your support.
Obviously we already love our little girl.
Since the very first time of my pregnancy ,my husband and I call her “BĂ©bĂ© d’amour”…
So it’s so hard to imagine the end…
Here in France, doctors also ignore this syndrome…
You all right, I try to see the reality of children and their families and do not dwell on what the doctors say or even loved ones and family who put us under pressure to not to keep our baby: as if we were crazy to want this little girl, our child “at all costs” while we have a choice. But what choice!
It is a rare disease and here in France we say “what is rare is precious”.
This is proof that our children are even more precious …
Before you read, see your kids move, smile at life, I was so afraid for her …
I was afraid that his life is only physical pain …
I realize that there still is hope …
We need to do another ultrasound Thursday 19 to see if our little “shrimp” has grown …
She is very very small and the doctor thinks that she won’t even weigh 1kg at term (2,2 lbs)
That’s what worries me more …
I wonder if the psychomotor effects are greater when the baby is born so small.
In any case, thank you for your presence and your support, even if you are very far from me.
Delphine,
I was wondering how your ultrasound went on the 19th. You’ve been on my mind a lot these past few days, and I hope all is well.
Thinking of you,
Heather
Delphine is absolutely right, “what is rare is precious”. The beautiful photo that introduces Kaylee to us is proof. This is how I see all the children I read about on this site. We are fortunate that we can see it. Those who don’t see it are less fortunate, perhaps more seriously disabled than our children. I wonder if there is any hope for them.