I have been reading WHS stories on this website for a while, but never wrote anything myself. My daughter Cassidy was born on June, 5 2012. She has WHS…
My entire pregnancy was fine. Neither ultrasounds nor prenatal doctor visits showed any abnormalities with her. We could not wait to meet her, but she was going past all her due dates. Finally, the doctor scheduled an induction on my birthday. And she was born, 5 lbs 6 oz; she was the best birthday gift I could ever wish. The labor and delivery were easy and fast with no complications. She was beautiful. But then I noticed her feet were turned inside, and I remember I got so upset because of that imperfection. I was told she had clubfeet (part of WHS), but even then they said everything was going to be fine, it is easily treated with series of casts and special Ponseti shoes. Her low birth weight, unusually small head didn’t raise any suspicions. I started breastfeeding her, and she was eating very well, we went home in two days. At her 4 months checkup she was 9 lbs 8 oz. Her pediatrician was very happy with her weight gain and overall development. It all started at 6 months checkup. Cassidy gained very little weight and was only 10 lbs 3 oz. They said she was developmentally delayed as well. She is my first child, and nobody told me she was not developing right for her age. We needed to have X-ray done to see if she has reflux, supplement her with high calorie formula, and do the GENETIC testing!!! They suspected a syndrome. I started crying, it is as if I felt they were right, there was something wrong with her, and I was scared to face it. The reflux (GERD) was confirmed. She would not take bottle because she was exclusively breastfed for 6 months. She would eat baby food, but would spit up almost the whole thing, so our life was spinning around trying to feed her and put on some weight on her. Then the syndrome was confirmed when she was around 7 months old. She has WHS with 3.6 MB deletion. The geneticists immediately told us not to look this up on the internet, because there is very little information and it is outdated. They suggested we pay them a visit, and they will explain everything in person. And they added her case was very mild. My whole world stopped. My hopes and dreams for my little girl died. I cried at nights trying to stay awake during the day to take care of her. I was mad, angry at God, almost suicidal. Now I accepted it. But there is this question I always ask myself – why? Why did this happen to me? Then I dwell into raking all possible reasons blaming myself for everything. I love my child to death, and I would choose to die now if it helped to cure her. Our life has changed forever…
Where we are at now:
– She is almost 12 months old. Developmentally at 4 months. She doesn’t sit on her own, doesn’t roll over, doesn’t reach for objects. But she smiles, giggles and has a separation anxiety from me. She gets very serious around strangers.
– She is exclusively G-tube fed, but hardly tolerates her feeds. She has retching episodes every other week. She is 14 lbs now, but they don’t know how to stop the retching and make her gain weight more comfortably.
– She still wears Ponseti shoes for her clubfeet at night and will continue doing it up until she is 2 years old or when the doctor tells us to stop to.
– She has kidney reflux, and they don’t want to do anything about it yet.
– She has a very small hole in her heart, and they think it will close on its own.
– She receives OT and PT every other week, and we have a feeding therapy every week.
– She takes Prevacid, Zofran, Periactin and milk of magnesia on daily basis.
We are trying to be very optimistic about the future, and see what story Cassidy will tell us. She is the most precious and sweetest thing in the world. She warms my heart with a smile on a rainy day. And she is my everything, she is the reason I live for.
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She’s a beauty 🙂 I am a mom of a WHS child named Korey. He had a severe case of WHS but thrived for 18 years. Korey was a joy. Love to you and your beautiful little girl.
Robin Christian
Thank you! Nice to meet you here. I am happy I found this web-site. It helped me through the toughest time. I can’t find your story, cause I would love to hear about Korey
Oh, My God!!! She is so pretty! I had the same problem as you do…The pregnancy was OK, the delivery too, the low birth weight, the hole in the heart, there was a problem with the kidney, too…I, also, did the genetic test…I cried a lot…I blamed God….I’m talking about my second child, my little daughter, Cezara…unfortunatelly, I lost her when she was 11 months old…here, in Romania, the doctors didn’t know much about the WHS…it’s been almost 4 years since I lost her…I never stopped thinking about her, I miss her a lot! She is my angel…Now I have two sons…Theodore came after Cezara…Victor, my first boy, misses his sister a lot…he was 8 years old when we lost her…I came to the conclusion that it was God’s will…I stopped blaming Him…I have many pictures with her…when Theo will be older, I will tell him about his sister who is in Heaven…I hope you have a lot of strength…your princess needs you a lot! God bless both of you…
Hello, Tamara! I’m Aura from Romania. I wrote a story in 2011, “My angel, Cezara”. Maybe it will help you…God bless your little princess! Be strong for her! And love her a lot! She is so pretty!!!
Thank you for taking the time to share with us. She is adorable. Our girl is Sophia and she was recently diagnosed at 6 years old, (she is 7, now). This journey has been bittersweet. She amazes us everyday and has overcome so many obstacles, we are thankful for her little life. I often find myself not wanting to change a thing, even though it has been so hard because she is so dear and perfect in every way. Our family has become stronger and the perseverance to enjoy everyday is a gift. Hang in there, the treasure far outweighs the struggles. Smile =)!
Your story resonates with me. My daughter is Isabella N. please read our story on this website and there’s also an amazing support groups on Facebook (Wolf Hirschhorn awareness and Wolf Hirschhorn syndrome)
Email me anytime to chat!and your daughter is gorgeous!!! M
First of all, I have to say that she is precious!! Secondly, my only advice to you is to enjoy your baby girl as a “baby” for as long as you can. She will meet her milestones when she is ready. I went through the same roller coaster emotions as you. My son, Nathaniel who is 2yrs & 4mths, has WHS and he still cannot sit unassisted, cannot talk (just babble), cannot stand, and cannot walk…YET. I know he will, and “EVERY LITTLE ACCOMPLISHMENT” to others are “SO HUGE” to us and he surprises us every day. Don’t give up hope and know that God will never give us anything he doesn’t think we can handle. When I was going through my “why” phase, I was told that God gives “Special Children to Special Parents” and it was then that I stopped asking “WHY” She and all of our little ones have been given to us for a reason and all we can do is love and adore them. Good luck to you and your family 🙂
Hi, Letty! It is so true about little “NEW” things that our kids achieve. They give me hope which is the only thing left after I found out Cassidy had WHS. Sometimes I am so tired of doctor appointments, therapies and many many unexpected things from my little one that HOPE is the only thing that keeps me fighting for my little child. And it is also true every child will do things at his/her own pace, and hopefully Nathaniel will too soon 🙂
She is beautiful. Thank you for introducing her to us.
Tamara,
Welcome to the WHS family! It seems like your daughter has a lot of the same issues as Amelia our daughter. If you ever want to talk please feel free to give us a call.
Just keep a close eye on the hole in the heart because Amelia’s never closed and cause a bunch of problems. E mail us if you like at josephrivera@Comcast.net
Welcome! Your daughter is beautiful. We have a similar story, not knowing about Riley’s diagnosis until after she was born. Riley is now 4 years old, she started walking at 2 1/2. She is also g-tube fed and not talking yet, but trying very hard. She uses sign language to communicate pretty effectively. She is starting in a typical preschool in the fall. Have the greatest hope for your daughter. Our kids may develop at a slower pace, but they continue to grow and develop continually. They are fighters and love to prove others wrong. Let me know if I can help in any way (cordillh@yahoo.com)
Hello and welcome! Your daughter is gorgeous! The grief part of the diagnosis is normal. I know we’ve all been through it before, but it will get easier. I believe God gives us these children to show us and others the miracles He can do through them. Can’t wait to hear of the miracles and milestones of your little one!
~Carissa (Ava Lynn’s momma)
Hello, Tamara. My son has this also. He is almost 14 years old now. I must say, my story sounds almost exactly the same. We also delt with reflux, the high calorie formulas and therapy appointments. For the first two years of Jack’s life I begged God to let me trade places with my son. I too went through anger, sadness and greif due to the loss of the child I thought I would have. He was also my first born. He is very developmentally delayed, has seizures and is completely g-tube fed. He walks with a walker or uses a wheelchair to get around. He is mostly non-verbal. This is not the life I had imagined when I became pregnant with him. I have never been so devestated over anything in my life and probably never will be about anything else. However, I had not imagined what I would learn from him. For every way that Jack is physically imperfect, he is socially and emotionally perfect. He likes everyone he meets. He is incapable of judging anyone based on their appearance or what they may have to offer him. There is no new toy or ‘thing’ he wants for holiday gifts. The one thing in this world he enjoys most is human interaction. I would have to say he is the most perfect human being I have ever met and probably ever will. For all the sleepless nights I spent crying, I could not have imagined that while losing what the world defines as ‘perfect’ I was gaining what truly is perfection in another human being. Jack displays the most real form of unconditional love and acceptance towards everyone. I hope that one day the hurt that I know all too well will subside in your heart, so that you may experience what is to be, instead of what was. People used to tell me, God gives special babies to special people. I know some people take comfort in that. However, I do not feel that I am that ‘special’ and wonder what God would have given me if I were.. God doesn’t give us more than we can handle is another one that people would say in a well meaning way. Jack’s father left us because he could not ‘handle’ having a child with disabilities. I found my solace in Jack himself. Watching him overcome obstacles and be so strong has given me what I need to be strong in return. Knowing that he can be happy with the simpler things has given me a new appreciation for the things I had taken for granted in my own life. I wish you the best and I know from your story that you are an amazing parent who loves her daughter more than life itself.
-Nicole K.
Thanks for sharing your story and child with us. All children are blessings and learning to treasure the one(s) we are given is a gift. My daughter Rochelle is 33 years old. I still enjoy her one moment, hour, day at a time. I love her just the way she is, but sometimes, I find myself thinking, ‘I wish you could talk and tell me how you feel and what you want’. It is easy to want what we don’t have. Rochelle has taught me that what I have is better than what I want.
Hi All,
Our Daughter Charlotte is 10 months old and we just received the call yesterday that she has the deletion. I am so fearful. I have no idea what to do. She is beautiful and wonderful. I am just wondering how to keep it all together.
Hello, Sarah!
I know that no amount of words of comfort, support from other people can soothe the pain you have when you first receive the news. But just know it will be getting better and better. Looking back now, I am amazed how strong I was for my daughter. Sometimes I wonder if I could do it again if I had to, and I don’t think I could take another heart pain like that. It is a lot! Please hang in there, and the sun will shine again for you and your little one.
Hi Sarah. I remember that moment like it was yesterday. My daughter is almost 5 months old now and although I found out when she was a week and a half old, I still have my moments when I don’t know if I will be able to keep it together. But this website is a great place to start. People here are very caring, supportive, and knowledgeable. Welcome to the family. <3
P.S. Your Cassidy Renee is just beautiful. I can relate to your emotional journey.
Belated congratulations on your sweet sweet baby. She has problems like most WHS babies but the amazing thing is that you will love her more because of them, not less. She has sparkly eyes and an adorable smile, and a mommy that is beautiful inside and out. You will have a great life together.
Hi Tamara – I adore your daughter’s picture. She is absolutely beautiful. My daughter was recently diagnosed with a deletion size of 14.8. I am slowly going over these stories as a way to cope and not feel alone. I appreciate that you took the time to write your story as I relate to all those emotions you went through. I can tell that through your love, your sweet daughter will thrive! Best wishes to you all!