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.

 

76 Responses to New Parents

  1. Lori and Kyle Tomer says:

    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

  2. crivera75 says:

    What a great introduction to the site and to new parents! Whenever I visit, I am always left inspired! Great Job!

  3. Wendy Wiest says:

    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

  4. Shannon Wilder says:

    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.

  5. nadwa says:

    un ciao a tutti..la prima volta che entro qui..sono una mamma di un bambino effetto di SWH. nato nel 2004.

  6. mimazo says:

    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.

  7. Melissa says:

    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.

  8. Dave Marson says:

    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.

  9. Lisa Dueringer says:

    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..

  10. Heather says:

    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!

  11. Carissa says:

    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)

  12. Jill says:

    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.

  13. Melissa says:

    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.

  14. Melissa says:

    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

  15. laura says:

    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.

  16. Letty says:

    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.

  17. 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.

  18. Letty says:

    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.

  19. 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?

  20. Letty says:

    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.

  21. Ben says:

    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..

  22. Anonymous says:

    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

  23. O.Demarcq says:

    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.

  24. Heather W says:

    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.

  25. Candace Peters says:

    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

  26. Tasha says:

    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.

  27. Ross says:

    Hi Tasha, glad you found us and welcome aboard!

  28. Lauren says:

    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).

  29. jaime says:

    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!

  30. Sandi says:

    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.

  31. Ressie Parker says:

    My daughter, Maliyah,just turned 11 this week. When we first were given her diagnosis,we were overwhelmed with the negative information. It was a scary prospect.Maliyah walks,talks,participates in special olympics for her area as well as the state games.She is in the fifth grade at school. She has a 1:1 para and is learning to read and do basic math. She identifies all of the safety signs in the school and delivers the mail in the teachers room. She knows her phone number and calls her sisters daily in three different states. She enjoys using her tablet and is an avid sports fan.She is a social butterfly who makes an impact every where she goes with her family with her great sence of humor.While there have been challenges,we are blessed that she is a part of our lives.

  32. Silvania Menezes says:

    Boa noite, mimha pequena Eloá tem 02 anos e 06 meses e agora foi descoberto que ela tem VHS, estou muito confusa, embora sabia que algo estava errado. Minha pequena nasceu com atresia de esofâgo, corrigida aos 03 dias de nascida. Desde então sua vida não tem sido nada fácil, ela ainda não anda e não fala ,seu desenvolvimento é bem atradado. Hoje nossa maior preocupação é com o ganho de peso, ela só pesa 08 quilos. Ela come pela boca, mas é uma dificuldade para ganhar peso e com isso sua imunidade é bem baixinha, a dificuldade do ganho de peso é normal ate que ponto dentro dessa síndrome? Tenho muitas perguntas, mas minha cabeça ainda ta tentando entender tudo. Obrigada!

    [translated from Portugese in Google Translate by Ross]

    Good evening, my little Eloa is 2 and a half and has just been diagnosed with WHS, I’m very confused, but knew something was wrong. My little one was born with esophageal atresia, corrected at 3 days old. Since then her life has not been easy, she still does not walk or talk, development is very delayed. Today our main concern is weight gain, she only weighs 8 pounds. She eats by mouth, but it is a trouble gaining weight and as such her immunity is very low. Is the difficulty of weight gain normal with this syndrome? I have many questions, but my head is still trying to understand everything. Thank you!

  33. Diego says:

    Yes, not gain weight its part of the syndrome, my son Alan was diagnose 3 days after birthday, he was taken enfamil 22 calories baby formula, and now pediasure, he is 2 years old, he is at 15lbs

  34. Nichole Robinson says:

    My beautiful little girl Shadyn was diagnosed at 2 weeks old. She is now 1 year. She has a small hole in her heart and may need surgery at some point not sure yet. She has been in and out of the hospital. She can not sit up or hold her bottle. Shis at about 4months developmentally. She has started to roll over and she giggles. She doesn’t eat food just doesn’t like it yet. She was 4lbs. 9oz. At birth and is now 12lbs. I am not sure what to expect as time passes so all I can do is hope and pray that she continues to make progress. She has had tubes put in her ears to help her hearing but she is still very hard of hearing. Next step is aids. If any one can help me to understand what to expect I would appreciate it.

  35. tugfah says:

    Found out today that my little girl has WHS and only after 5 years we found out

  36. Morgan says:

    My husband and I found out that our little girl has WHS about a month ago. She is 17 months old. This has been very hard to come to grips with, but reading the stories on this website has been very encouraging. I only wish I discovered this website first when I googled Wolf-Hirschhorn…

  37. Allison Perdue says:

    Anyone in the Atlanta area have a wolfhirschhorn child?

  38. Michael Licari says:

    Hi this is the first time I posted n e thing ever on my whs baby gir.
    She’s 4 months old 8 lbs and we have to make a decision on a feeding tube :(
    I don’t want to do it, but my wife does, any thoughts?

  39. Hi: response to Michael Licari – I have a 35 year old son with WHS. We had the opportunity to do a feeding program when he was 5. It made a HUGE difference for him. We did it for 3 years. Now at 35, he has to exercise to keep weight off. At 5 years old he only weighed 24 lbs. Now he weights 140 lbs. As my physician said at the time: “if the body is starving, the brain is starving”. In my opinion, it is an important intervention. We have utilized many different things over the years and Ryan is an extremely happy young man. We are very proud of his accomplishments.
    Joyce Rivington

  40. michael L says:

    Hey Joyce, I’m glad your son Ryan’s doing great and 35 years old that’s awesome! My daughter Emily was was born full term at 4 lbs 8 oz then dropped to 4 lbs at almost 4 months old she’s 8 pounds 3 ounces, my pediatrician says she’s doing great but a gastroenterologist says for her to get the surgery for the tube. She’s doubled her birth weight in 4 months when a normal baby doesn’t till 6 months old so u can imagine why were conflicted. Lol!

  41. michael L says:

    Also I keep hearing from ppl that if I put her on the tube she’ll never eat real food! Is it rare for whs ppl to eat solid off a plate?

  42. Anonymous says:

    Hi Michael!
    My daugther Eve is borned full term in 2007 and she was around 4.4 pounds. She lost almost a pound during the first month because I was only breast feeding and I think it was too exhausting for her. Then, I started to give her bottle with my milk for almost 4 months. When she was 6-7 months old, she was still under 8 pounds. So,we started a richer milk first. But more the milk was rich less she was drinking. The doctor told me that it would be better for her to be feed by G-Tube (going through her nose). They told me that she will be stronger if she could be a bit bigger… So, I started the G-tube and the pump and everything. Was’nt easy.A lot of questions from people that I knew and people on the street. And she wasn’t able to take more milk. Her stomach was little. SO she wasn’t always able to “keep it”. When I started the tube, she stopped drink by herself. Too much energy. So, yes, it has been hard to get her back to real food, but we did it. When she started daycare, at 2 years old, I kept the tube for the night only (one drink in the morning and the other in the evening). I removed the tube for the day. She eat just a little first, and than a little bit more and…D Melas time was quite a battle but few months after, I completly stopped to feed her by tube. I gave her the special milk with wather first (half-half) and slowly more milk and no water at all. Today, she is 6, she really enjoy meals time, she eat a lot (more than many other kids of her age)but she still is unable to chew so I mash all her meals. Still working on it! I refused to make an intervention to do a”button” on her stomach to make feeding easier because she was not having any problems to swallow. Its a really personnal decision. I’ve some friend that did it because their daughter had difficulty to swallow liquid. Now, she is 4 and half, and she eat by herself. They use the “button” ony when she is sick or really tired. So if you start the tube feeding, just try to continue stimulate her monthe with something (food, beverage, toys,…) because a lot of developmental stages start their. Good luck!

  43. Susan Martin says:

    I’m not a parent, but a teacher of a student with a 4th chromosomal deletion. My biggest worry is that this average height child has been losing weight. While the child is on a blended diet and thickened liquids, H loves to eat, but in the past few months we have seen regurgitating food throughout the day, sometimes just a bit, often a large amount several times. H joined us at 7 years old, speaking one or two words and very happy. Now 10, H has no words, limited eye contact, extremely skinny, and tolerance for pain is really high. H is the most fun and loving student, and is so sweet and tolerant, but I worry about the weight loss. I’m not sure if H has WHS, but am searching for any insight as to eating and reaching a healthy weight. H does have what I always called a “classic profile”, which I believe would be the ‘Roman Helmet’ described. Sorry for not naming H, but I wouldn’t want to violate privacy. Thank you for any ideas, resources, etc. I hope your journeys are filled with love and joy.

  44. Laurie says:

    Susan,
    H’s mother needs to have her son evaluated for reflux if he is vomiting foods. Assuming he does, indeed, have WHS, reflux is a common issue and failure to treat with appropriate meds can burn his esophogus, which can be very painful and dangerous. It is possible that he has had silent reflux for years. As for eating/ gaining weight and/or weight loss, again- his mother needs to make a call to a GI and nutritionist. One of the classic issues/traits of the syndrome is slow growth and small size; however, regression as you describe is not typical, from my understanding. Please reach out to the parents and implore them to seek medical treatment for their son… What you described is not normal or healthy for any child- even those with WHS.

  45. Catherine says:

    Hello- I am not a parent but a teacher/para aide working 1:1 with 11yr old girl. She has been granted this special assistant in the elementary school, yet remaining in mainstream 4th grade class. It is a new situation for the school, teachers and me. Looking for any resources, guidance, information that can help me, guide her. She is testing me with her defiance- any tips when it comes to discipline , establishing rules, boundaries that might be different than doing the same with kids that don’t have whs? Lesson plans, websites, etc to look into? Thanks so much!

  46. Sandra says:

    Hello Everyone! Camillah my beautiful little munchkin is 49 days today;) At 24 weeks pregnant I was told about her condition “Severe Wolfhirschhorn syndrome” I’m new to all of this and so I will like to reach out to all the parents who live in Chicago… Please Let me know!
    Thanks!

  47. Kristen Faccioli Licari says:

    I wish I had visited this section when I first discovered and started using this site….I’m not sure why I didn’t. How exciting it is to see so many cases of older WHS children. As the Mom of a 6 month old WHS female (Emily Rose), it is a pleasure and a relief to see that there are older WHS children out there, although it does not seem that their families are contributing much anymore….I don’t know whether or not I should be alarmed by that. Nonetheless, the simple fact that they are out there is of great comfort to me, as I worry about my little girl on a daily basis, although thankfully not nearly as much as I used to. If any of you WHS families of older kids are still out there, please let us know how you and your children are doing, as most of us have little to no basis for comparison and would love to hear more.

  48. amanda says:

    Hi my name is amanda and I’m 24 years old I just had my first son on July 17, 2013. On monday we found out that talon has whs. When I heard the news it broke me and now I’m not sure where to go and what I should prepare for.

  49. Sharon says:

    I am the parent of a 12 year old girl with WHS…She is in an SCD class but I would love for her to be mainstreamed with an aide…do you know how these parents got the school to agree to this?

  50. Chloe Bradwell says:

    Hi, my daughter is 8 weeks old. She was diagnosed with WHS at 10 days after id been told she had downs syndrome. On day 10 Iyla was suffering respiritry arrest and an circulatory collaps, she was intubated and ventilated and i was told she wouldnt make it, whilst this was all going on they told me her results of the genetic testing and that they had never heard of the syndrome. Once Iyla was on the road to recovery i started to look up the syndrome wich at first terrified me but looking through the photos and storys from parents i am alot more posotive for Iylas future. i am interested to learn more about what to expect for Iylas future, in her short life we have had many visits to hospital and are currently batteling the rsv virus and Iyla is once again ventilated. Shes such a tough little baby and is fighting this hard. I would be greatful of any advise you can give. Thankyou.

  51. tugfah says:

    hi my name is tugfah my daughter eleana is 5 years old and was diagnosed with WHS about 5 months ago i am still new with all this information and trying to find answers many doctors in south Africa has not heard of this syndrome and it makes life difficult cause she does not get the proper care that she needs do you guys perhaps have a booklet that has all the information on how to go about treating or investigating WHS related matters that i can present to them? when i tell them about WHS they look at you as if you don’t know what you talking about because you not medically qualified thanks lot and any info would do

  52. Ashley P. says:

    Hello all, for all you new moms and dads out there, I work with a young lady who has a less severe case of WHS and she is 25 years old! Mentally, it is like she is 5 as she enjoys watching her cartoons and movies and loves anything sparkly and pink and does need a lot of prompting and verbal support, but she is also a lot like any other 25 year old woman…she likes to be showered and have her hair cut and coloured and wears nail polish and jewellery, and to go out for lunch. she can read to a certain extent, can write, knows her numbers and letters and is a very active volunteer member of the community. so dont lose hope if your child has WHS! each diagnoses is unique to the individual and it’s all about learning to help them reach their full potential to the best if their ability :). good luck everyone!

  53. Shameen says:

    Sharon I have a 9yr old who is mainstreamed. 1st, LRE regs point in favor of parents who wannt their child in their neighborhood school. 2nd, the public school district/county needs to prove hands down that that your child cannot meet the requirements set forth in the IEP in the neighborhood school…which is why the 3rd point is critical; you need to devise your IEP in such a way that it calls for mainstream environment. Now in the case of a child already in their neighborhood school but not mainstreamed, only the 3rd point applies. Get a good advocate/lawyer that specializes in inclusive education. This is what I had to do. But it doesn’t stop there…you need to advocate to the teachers and principal ‘how’ inclusion can work…find training opprtys or bring trainers to your school to discuss strategies. Otherwise your child may end up in an environment filled with unmotivated teachers.

  54. Shameen says:

    Tugfah do you have access to facebook by chance? You will get a faster more immediate response there from parents. Also there is a biannual conference where leading genetics and neurologist who study whs come to speak to parents about the latest findings. Finally there is a 2010 or 2012 study on WHS online. Try and google…it is on a notable genetics website.

  55. Francheska cepero says:

    My name is francheska cepero i have an 11 yrs old sister with wolf-hirchhorn syndrome. Shes doing really good but shes unable to walk or talk. Shes very alert and her fine motor skills are really good. I would like to contact people from florida with the same syndrome.

  56. SofiA says:

    Hello, i have a 14 month baby girl with whs. she was born with a cleft lip and palate, pinched nerve in the spine and a medium sized whole in her heart. The cleft lip and spine were successfully repaired before she turned 1yr old. Her next operation is her cleft palate when she reaches 20 lbs. she has seizures and acid reflux too, she takes Keppra and Zantac. She is not a mild nor severe case per the genetecist. I love all of your stories. My daughter may have whs but the joy that she brings to me and my husband is just great. She is our purpose in life and we love her dearly :-)

  57. Brittany says:

    Zachariah will Be 4 this year at birth I was very active with other families but as he grew older, We started having a lot more going on.. Life is finally slowing down some not havin seizures every other day and finally starting to grow with lots of bolus feeds every 3 hours pushing every calorie that we can. Seeing surgeon for hypospadias as well waiting for the date of it this journey hasn’t been easy but sure has been worth it I would love to get in touch with other families who are close to our area.. We are located in ironton ohio, If anyone is close please get in contact with me at bshyian@icloud.com

  58. Bill says:

    5 days ago my granddaughter was born. This WHS was a surprise to us and we are trying to find our way. I was wondering if there is any advice you might give to young parents who have a child with WHS. Is there any equipment you might recommend having at home once they do come home from the hospital? Any help would be awesome.

  59. Tychiecus says:

    I have a 7mouth old daughter that has WHS.She will not drink more then 2oz of milk when she eats she is small for her age,she also has seizures every day.I will love for other parent to contact me I’m in need of any info that will help us on this journey please.

  60. edouard says:

    Hello, I am the mother of édouard, a beautiful little boy of 6 months. Friday we learned that he was suffering from WHS. He weighs 10 pounds. His neck and head have no tone yet. I would like to have more information about everyday life with children. We are from Québec,Canada and here the information is limited. Thank you for helping me

  61. latonya says:

    my name LaTonya Hogan’s I stay in st.louis Mo I have a 8month old daughter that was born with whs..she only 10lbs ..when the doctors first diagnose her she was 2weeks old I didn’t understand..I’ve blame myself I didn’t smoke nor drink. were did it come from. I just started getting on the internet and started researching bout it heard different story and amazing stories also..I would love to meet and see kids with my daughter syndrome ..

  62. Hello My Name Is Carly Williams I Have A Son Who Is Five Months Old He’s A Little Fighter I Found Out My Son Had Wolfhirschhorn Syndrome When I Was Eighteen Weeks Pregnant And Since The Doctors Told Me All They Did Was Try And Get Me To Get Rid Of My Little Boy I Refused To Listen To Any of Them And For The Rest Of The Pregnancy I Just Had More Bad News I Carried On Putting A Brave Face On I Was Sixteen When I Found Out I Was Having My Little Boy I Turned Seventeen When I Found Out I Was Pregnant And I Was So Excited He Was Born On The 25/03/14 He Weighed 3 Pounds 15 Ounces I’m Still Struggling With Coming To Terms With What We All Face I Just Feel So Alone And I Just Want To Cry I Feel Like I Did Something Wrong For My Little Boy To Have This Syndrome But He’s Now A Little Fighter He’s My Everything He’s My Rock <3

  63. casen says:

    I know how you feel, my baby casen was also born at 3 lbs 15 ozs. He was born on April 17th 2014. He was diagnosed with wolf hirschhorn syndrome 3 weeks after he was born. So far all is good with casen at the moment. He’s smiling and tryn to spat at the little toys on his monkey bouncy. We love him dearly he is so sweet and we couldn’t imagine life without him! If you ever need someone to share stories with,I would love to share stories about our little ones. We would love to hear how your little guy is doing! :)

  64. Shelbi says:

    Hello,I am a first time mom and I had my daughter at 37 weeks she was 4 pounds 10 ounces and 18 inches long. I had Iugr and they didn’t want a still birth. she is now 2 weeks and 3 days old! We just found out that she may have whs.. She has been in the nicu since she was born due to her getting tired when she starts bottle feeding! We are at 4 bottles a day and the other 4 feedings are in a tube that go into her belly! She doesn’t have many of the signs/symptoms of whs.. They are doing an ekg, heart scan, and a sonogram on her kidneys to make sure everything is ok! It is super scary but our little girl is a fighter!

  65. ilia costa says:

    Hi my name is Ilia and we live in South Australia and I have a 17 year old son who was only recently diagnosed with WHS a couple of years ago. Benjamin was born at 39 weeks and weighed 5lb 4oz he was born with severe club feet but with physio and a couple of operations back 10 yrs ago is walking real well. He is also mentally challenged. When we were told of his syndrome I had never heard of it and would love to hear from other parents and there children on how they cope and any milestones they have. Benjamin is a beautiful boy and gives us so much in return.

    Thankyou

  66. Lottie says:

    Hi! I’m a foster mom to an adorable 3mo with WHS. I have so many questions and would love some help! For example, does anyone have any suggestions on specialists she should see? So far she seems to have good leg/arm movement-should we be doing exercises?

  67. Kate says:

    Hi, my husband and I recently received the news that our unborn child has WHS, and it is very frightening not knowing exactly what to expect. We have been told that her deletion size is quite significant-4P15.2. I am wondering if any of these children who are doing so well have this same extent of deletion? We are trying to get a better idea on what to expect for her. Any other advice for an expecting mother would be greatly appreciated.

  68. Lucho says:

    Hi I have a baby girl 8 months old, earlier this month we had the karyotype test , my daughter has this disease, I love her so much my litle baby girl… We live in Guadalajara Jalisco Mexico

  69. suzanne Ferguson says:

    My daughter, Savannah, also has a fairly large deletion but is doing great. She is 10 years old, walking and talking, and is in 4th grade. Please feel free to look at my Facebook page (Suzanne Ferguson)

  70. Hannah says:

    Kate, Welcome to the WHS community. I have a 5 year old with a deletion size of 8.9 mB. Don’t let the numbers intimidate you. There is so much controversy about the correlation of deletion size and severity of the syndrome. Each child really is quite unique. Riley started walking at 2 1/2 and while she isn’t talking, she communicates quite effectively. She has a few medical issues, but really is doing great. The first year can be tough just wading through all the appointments, but life will settle down quickly and you will have a new normal. I wish you the best with your pregnancy, enjoy it and your your new baby. Feel free to email me with any questions, cordillh@yahoo.com

  71. Cheryl Donovan says:

    Kate,
    Find me on facebook.
    Cdonovan524@gmail.com
    Im Liams mom, he’s 2 1/2.

  72. Wendy Gilker says:

    This You tube video presents a short idea of our life. My daughter Bree is now 34 1/2 years old. The foundation to our lives has been a Macrobiotic/Raw diet/lifestyle. I have cared for my daughter, basically alone most of these years. The last couple of months I have been making some You Tube video’s on the healing foods I have cooked for both Bree and myself so prolong her life, health and well-being. Bree is medication free, seizure free and rarely gets even a cold. The video’s are a way that Bree and I can share our lives with each of you and maybe they can be of help to you.
    http://youtu.be/x9Y74rLltuI is the first video.
    2-Wendy Gilker talking about her profoundly handicapped daughter Bree
    3-Bree’s Green Smoothie
    4-Bree’s Veggie Dishes
    5-Bree’s Grain Dishes Part 1 Brown Rice
    6-Bree’s Grain Dishes Part 2 Millet & Quinoa

  73. Nayara says:

    Ola! Meu nome Nayara. Sou do Brasil. Não falo ingles. Com a ajuda do Google, tenho a facilidade de entender um pouco o que dizem. Tenho uma filha de 8 meses, chamada Lara com WHS. Esse site tem me ajudado muito.

  74. costanza says:

    Ciao sono italiana,mi chiamo Costanza,siamo genitori di Camilla nata il 31 Luglio 2015,vorrei tanto sapere quando stara’ seduta…ma e un guerriero ce la fara’ prima o poi…ha avuto le convulsioni e stata molto male ora sta bene.Ciao

  75. heather says:

    Hi, I am a new mom of a beautiful baby that was born with wolf hirschhorn. He was born 4 and a half weeks early and weighed 3lbs 12oz. He is now almost four months old. This has been the hardest thing I’ve ever gone through in life. I have so many questions and such much anxiety about his disorder that it consumes all of my Thoughts most days. I have felt alone and scared since he was born. Our doctors don’t know a lot about this disorder and along with him being premature they can’t tell me if where he is developmentally is normal or Not. Even though the geneticist says he has a major deletion, We were blessed with only kidney issues associated with this disorder, so far. We do struggle with feedings but he is taking enough orally to not have to have a GI tube put in. He now weighs 7lbs 7ozs and I’m not sure what else we can do to help him gain extra weigh. I’m just still in shock and wish I had some answers to ease my troubled mind. Sorry about the rambling, I’m just so lost still. Any similar stories or thoughts would be great. My email is Heathercosta87@yahoo.com.

  76. My sweet Vayda is 6 months old. We are from a small town in southeast Ohio on a farm. She was diagnosed with WHS two weeks after birth. Shortly after she was born she was life flighted two hours away due to respiratory distress. During my pregnancy we were told there was 1/10,000 chance something chromosomal would be wrong with our girl. She was hospitalized for the first three months of life. During these three months we found out many things. She has apiration while drink bottles, which led her to not wanting to eat. She now has a Mickey button but only used for meds currently. She has a kidney reflux. She already had s prescription for glasses. Slow weight gain, not very vocal, and doesn’t adapt to change very well.

    The questions I have are unreal at this time. What are some behaviors I should expect, eating habits to change?

    I would love to get into contact with a new mom with the syndrome so we could learn together. Even others who would like to hand out info and/or stories of your sweet babies would be amazing. Thanks in advance. God bless!
    Contact me at: pjfickiesen@yahoo.com

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