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 have a 15 month old son who was diagnosed last Friday with WHS. I have tons of questions, like is mental retardation always associated with this syndrome? Everything I’ve read makes it seem inevitable. I know there are different levels of mental retardation. I worry about him in the future…..no one will ever take care of him like I can. I can and will do whatever it takes for him, but I wa just wondering.
My name is Melissa and my daughter was diagnosed with Wolfhirschhorn Syndrome. I need advice or any tips on how to get her to gain weight. The doctors have tried pretty much everything they can think of. We are running out of options.
For Melissa…..my son Nathaniel was on thickened neosure for the first year of his life and it wasn’t until he was a year old and the discussion for him to be switched to whole milk was his weight an issue for the pediatrician. I had always worried about his weight. I went in and spoke to the nurse practitioner, who happens to be wonderful, and I mentioned how he was 12 months and just right at 12 lbs. and how delayed he was. I also explained that I had been trying to get him in with a neurologist since he was 7 months. SHE is the one who got the ball rolling. The actual pediatrician is very conservative and said “he’s growing, but at his own pace.” She didn’t see that. Needless to say, Nathaniel began seeing the nurse practitioner from that point on. Anyway, she set him up to see a dietician. The dietician recommended pediasure instead of formula, pureed foods if I could, and adding butter to his baby food. We went back 2 weeks later and he FINALLY broke through the 12 lb barrier. I was so glad. He finally had some meat on his bones. I would recommend getting set up with a dietician so that they can monitor his calorie intake and keep track of her weight and length. Good luck to you and your family.
For Letty….. thank you for your response. We have seen a dietician on more than one occasion and have kept a close eye on Meekas calorie intake. Last October she had a fundo with a G-Tube insertion because she got to the point where she couldnt keep anything down due to reflux. At that time she was on Neosure. She was then admitted to the hospital 3 more times for weight gain issues. They decided to put Meeka on Allimentum. Since then she has had multiple surgeries for other health reasons and that sets her back even more. Meeka still gags and retches to this day and its the most awful thing to watch. She is on on a continuous feed thru her G-Tube because she got to the point where she cant tolerate bottle feeds anymore. I started her on baby food in December and she did great for a couple months then she got to the point where she couldnt tolerate that by mouth anymore either. Meekas weight has pretty much flatlined. Her 1st birthday was May 18th and she weighs 9lbs. Her GI doctor admitted her on May 22nd to try a new formula and monitor her on it. The new formula is called Elecare. The first day she gained but she was still gagging and retching bad so they decided to insert a GJ-Tube on Wednesday the 23rd. That made Meeka gag and retch even more which made her lose weight. Since she was gagging and retching more, the balloon broke. They ordered another one and that was inserted yesterday. When Meeka had just the G-Tube, she had retched so hard that we went thru 3 buttons in one month because it was breaking the balloons. Meeka is still in the hospital. She has always been getting enough calories, but she burns so many calories when she gags and retches she doesnt continue to gain weight. After they put in the new GJ-Tube yesterday she seems to be doing better. Im praying that when they weigh her at 7am, she will have gained. Thank you again for your response. Its nice to know that I am not alone and have people to relate to. I would really like to put Meekas story on this website but i dont know how. Im am not good with computers at all. How do I go about doing that?
I didn’t realize that Meeka’s story was so complicated. I’ll definately be praying for her and your family to stay strong. She seems like a little fighter, good for her!!! As far as posting her story, go to “Our Stories” and click on “LOGIN” then click on “Register” and go from there. This has been the best therapy for me. When something new has come up or if I feel like I don’t have anyone to talk to, I get on and post an update and I feel 100 times better. And the feedback just reminds me that me and my family are not alone in this big world. I wish you’ll the best of luck and I hope to read Meeka’s stories soon.
My daughter Kennedy was born 9/24/11. She was diagnosed at 3 months with the disorder.. She came at 34 Weeks, weighing 2 pounds 8 ounces.. Her weight today was 7 pounds 8 ounces. Physically she is normal, the genitic doctor said by looking at her you cant tell she has it. At 2months old she had surgery for her pda,she still currently has an asd.. Is weight gain an issue for other parents? Im pretty new to this still so any info you share is greatly appreciated. She had some reflux issues, but it seems to only flare up when she gets sick.. Shes been admitted 2 different times over night due to upper respatory infections.. I stay at home with her 24/7. Shes my world. Im a young parent at 26, my wife is 33. This is my first child. She gets physical therapy that seems to really help her.. Shes also recently been prescribed glasses, anyone else have a child this young with glasses. 3 months ago her eyes were perfect.. So that kinda worries me. I will do anything for her and provide any care she needs.. Shes my world..
Hi Ben! Im also new here, my son Tobias was born 13.09-2011, wight 2400 g. We lived 6 months in the hospital before we culd take him home. We still stay at the hospital every 6 weeks or so. He has big reflux issues and we are trying out different med. He gain wight very slowly, but he groves in his own speed. Physical theraphy is wery good for thees children so we take all we can get! We live in Norway and the help has been grate from the first day.Are the system where you live good for parents to cildren with special needs ? I hope so!
He was diagnosed at 3 months with the disorder and I must say it was a big slap in the face….
But you know, the love for our kids conquers all….;-)
I wish you the best and hope you find help and support on this webside!
Marte
Good morning to all of you. I’m french, so I hope my english is not too bad for such a difficult discussion. My son, Aymeric, was diagnosed in january 2002, so I can offer you 11 years of experience with WHS. He was born at 1.690 kg for 41 cm tall. The pronostic was established as he was 9 months years old. First, it was the most difficult thing to face to, but time passed, and now, I’m surely one of the proudests father over the world. He walks, talks, laughs, loves and is loved. He just wrote his name for the first time two weeks ago. He walked at 5 years old. Did we suffer ? yes, of course. But I realy hope that this site could give me the opportunity to make something good with this suffering, and to give to some people strength, courage, and hope to face the reality of WHS. Aymeric shows me everyday what life is, and i see through him an amazing world. He makes me better, stronger, taller… father. I wouldn’t be able to answer all of your questions, i just can say that I’ll do my best. I know what kind of fight it will be. Every smile of your children will be a victory. And there will be many ! And if some of you all could be helped by what I know, it’s me who’d say thank you.
Thank you to O. Demarcq. Your kind words are very encouraging. It’s wonderful to hear the pride in your words as you talk about your son. We would love to see some pictures or read more about his story, if you get the chance to share that with us.
Our daughter Taelyn is 5 years old she was diagnosed with WHS while I was pregnant. I just found this website and I think its awesome, I wish I had seen it when she was younger. Taelyn has been through many battles and surpassed the docs expectations that she wouldn’t live to see her 2nd birthday. She starts kindergarten in 2 days! However she is still not sitting does anyone know if these kids don’t ever sit or how I can help her reach that milestone? She has seemed close for years but no more progress is being made.
Thanks for now,
Candace
Hey everyone, I am new to this site; however, I am not new to the syndrome. I have a 7 yo daughter, JaNiya, who was diagnosed when she was 6 mos old….I know there are people/parents out there that are new to this journey…and I will be happy to share our ups and downs with you all.
Hi Tasha, glad you found us and welcome aboard!
Our daughter Elise was diagnosed with WHS when I was around 32 weeks pregnant. We were sent to a Maternal fetal Meds doctor at 20 weeks because the couldn’t see her stomach on ultrasound. At around 34 weeks pregnant Elise’s stomach appeared. Once born the passed a tube down her throat to make sure she didn’t have Esophageal Atresia. Elise is now almost 6 weeks old she has a button, cleft palet, ADS and a leaking valve which has managed to close almost completely by itself. She also has the Greek Warrior Helmet and the further set apart eyes. If you didn’t know us you probably couldn’t tell she has anything wrong. She came home from the hospital at 31 days old. Elise’s deletion is 4p (15.3).
Hello all, what a wonderful site you have here. My 19 month old son Sam has been tentatively diagnosed with WHS, although he does not have a 4p deletion, rather a duplication in the same area. We are Canadians living abroad in Australia and need to wait almost a year for genetic counselling does anyone know if a 4p duplication also categorizes as WHS. He exhibits moderate developmental delays, strabismus, low muscle tone (though he is almost walking) and feeding difficulties. Your thoughts would be greatly appreciated!
Hello everyone. I have an 18 year old daughter, Rebecca, who was just diagnosed today. We stopped hoping for a diagnosis when she was 3-4 years old and just recently went back to see our geneticist who did a chromosomal array test that wasn’t available 15 years ago. Now we have our answer, finally. Reading your stories and looking at the pictures of your beautiful children remind me so much of Rebecca’s childhood.