New Parents Start Here
If you are a newly diagnosed parent of a child with Wolf-Hirschhorn Syndrome, this is the place to start. Our site has loads of information about everyday people in your shoes. wolfhirschhorn.org is here for parents and family to learn and share experiences, challenges and emotions with others. This is a place where our children thrive. This is a place where you can be you.
If this is your first visit to wolfhirschhorn.org, we recommend that you read the About Wolf-Hirschhorn Syndrome page, but keep in mind that all of our children are different. The worst case scenarios that you may have read on other web sites may not be what you should expect to experience. In fact, there are great stories that exist all around you while you are on this site. None of us that contribute to wolfhirschhorn.org ever expected to be here, but we are. And now we know what it is all about. We believe in our kids, we celebrate their lives, and they give back to us more than we ever expected.
So start now and read Our Stories, but come back to this page often as more resources will be added on a regular basis.
I stumbled onto this site this evening and I was so thrilled! I’ve not been able to look at the entire site yet, but will be back. When my daughter was diagnosed (finally) at 6 months, in 1986, there were only 60 some odd known cases in the world. I can’t tell you the brick walls I ran into, but have learned so much; it would have been nice if there were others back then, to have a little moral support, but how nice to run into others who know and understand what we went through! I actually spoke at the National Genetics Convention, in Charlotte, NC in 1987 or 1988 after Megan’s 1 year check up and told the head of the genetics department how they needed to change their practice of diagnosing and dumping this horrible prognosis, but giving the parents no direction or ideas of where to start to help their child…as a nurse, I know it’s much different now, but at the time, they told me, “she won’t live past 2, and if by some miracle she does, she’ll never walk, never talk, be unaware of her surroundings; she’ll basically be a vegetable.” At the time, they recommended I put her in an institution. I told them she was my child and belonged at home with me, just like her brother. Megan is now 25, loves her brother, sisters, dogs, music, books and food! She was one of my bridesmaids at my wedding a year ago (with a little help from her sisters) and is a very happy young lady and has taught me more than I could ever imagine about love, life, priorities, forgiveness and so much more!
I can’t wait to look at the rest of your site!
Lori Tomer
What a great introduction to the site and to new parents! Whenever I visit, I am always left inspired! Great Job!
just came across this website…so wonderful to find…My son Bryce is 15 diagnosed at 2 years old..born at 33 weeks…numerous health issues…he can’t walk or talk…he is tube feed at night…eats pureéd food by mouth….We recently developed low blood sugar and could not find if this was related to syndrome or if other children have had this issue and if anyone knows what causes it…thank you again for this wonderful site…will definitely stay contacted with others”’Wendy
My son, who does NOT have WHS also had low blood sugar when he was that age and out grew it. I think it must be a hormonal thing. We would test his blood sugar with a glucometer (his older sister is diabetic). Eating a CARB would help before he went to bed. And we also noticed that for some reason, it happened more around the holidays > maybe stress related? Eventually, like I said, he out grew it and is now 26 years old and hasn’t had an episode in 6 years. Hope this helps.
un ciao a tutti..la prima volta che entro qui..sono una mamma di un bambino effetto di SWH. nato nel 2004.
I’m so glad to see this site! When my daughter was diagnosed in 1998 we were handed a stack of copies from medical textbooks, full of medical jargon and horrible pictures. It’s great to have a place where parents can share their stories.
Help! I am currently 22wks pregnant and last week I was told my baby girl had club feet and a diaphragmatic hernia…I have today found out she has wolfhirschhorn! I’m so confused, upset and unsure what to do. The specialist has made it sound like there is no chance of survival and it may be better to terminate the pregnancy now. I feel my baby girl move and kick everyday, I can’t imagine losing her. Help me please! I have to ring the hospital tomorrow to discuss what I want to do! is it normal for WHS babies to have club feet and diaphragmatic hernia? Will she pull through? Am I kidding myself? Any help or advice would be appreciated.
I have a Wolf-Hirschhorn step daughter, she is 13, even though she is not mine, i love her more each day. Her mother was told that she also wouldn’t survive past infancy. She has complicated needs but is a joy to us every day. If you cant survive the first couple of years, the rewards will come. Only you can decide what is best for you and your family.
Hi Melissa, My name is Lisa and my son Talon has WHS, he will be 5 in July and is a amazing blessing in my life, though there are so many different complication to WHS. I can not tell you how your daughter will or will not be or survive, but I can tell you… If i listen to the the doctors, I would have just given up. And well my son is now running, laughing playing feeding himself and well the most loving and loved little boy ever! You need to do what you feel right for you, and though many children born with WHS are very ill, others are doing extremely well. https://www.facebook.com/profile.php?id=1545046952 Please feel free to check out my facebook, and message me anytime of you want to talk, i will answer anything i can..
Hi Melissa,
My daughter Lucy is 2 and half months old and was diagnosed with WHS about a week after she was born. So far she has had almost no problems, but every child is different, and I suspect Lucy’s challenges are to come. I have no advice to offer, as I am pretty new to this myself. I think you have to make the choice that is best for you and your family. I can tell you that my family, friends and I love our little Lucy. I hope you have a lot of support around you in this difficult time. I can tell you that it gets better. Good Luck and all the best!
Melissa, I too found out about my daughter’s diagnosis when I was 24 weeks along in pregnancy. You’re right – it is very upsetting and confusing. Termination was never a thought for my husband and I. We know God has a plan for her and our family even if His plan included health difficulties and/or her death. I will pray for you.
~Carissa (mother to Ava Lynn)
Melissa, my prayers are with you. I can tell you our son Peyton is a blessing even with his challenges. He is happy and enjoys life! My advice is listen to your heart because Even if it seems impossible the kids are a joy.
It will be hard but worth every minute. And this is only the first of many doctors that you will come across that don’t know what they are talking about. The first of many battles with said doctors. But again, worth every minute.
Thank you for replying and I apologise if I have posted in the wrong area of this website. I am so thankful that I have found this site and have been able to read everyones stories.
I have not come to any dicision yet though I feel the pressure to terminate from everyone around me. The fact my baby girl has a diaphragmatic hernia puts her survival rate at around 80% with a 60% chance of a successful operation when she is a week old. Her survival rate has dropped significantly by discovering she has WHS which explains her diaphragmatic hernia and club feet. Do you know of any babies in the same/similar situation? Is there anyone from New Zealand that I could talk to who has been through this? I suspect my specialist is not familiar with WHS as NZ is such a small country and I’m guessing there has been few cases. However I could be wrong. My head is spinning with so many questions and most of which cannot be answered. I don’t know what I should do for my baby girl. I am 25 and will be a solo parent and although I’m a strong person I’m not sure how I’m going to make such a big decision x
Very interested in speaking with the tomer family. I have a 19-year old child with Wolf-Hirschhorn syndrome who is experiencing difficulties at this time with insomnia. Very interested in sharing ideas.