I am hoping this works. I created a video of Mia’s first three months in the NICU and her first month at home. I am attaching the link. It is my first video using the movie maker program so I am sorry if there are mistakes as I am still learning! Enjoy!
If you enjoyed this article, please consider sharing it!
Thanks for sharing Chrissy. Nice work on the movie!
I edited the post so that the video shows up in the post without having to leave the site.
Watching your video brought back so many memories of Clare’s early days – she is 19 years old now. She was watching it with me and thinks Amelia is very cute
Hi im Rick, im 26 and my partner Emma is 24, and we have a son Mikey who is 3 in July. We are expecting our daughter Ruby in May, but found out on Tuesday, after knowing for 2 months she has a cleft lip & possible pallet, she has Wolf-Hirschhorn Syndrome,which we have never heard of before, although my sister had an Edwards Syndrome baby, and we also found out she has a large hole in the heart. We went to Guys Hospital in London on wed 31/3/10, where we were told Ruby has on a scale of 1-10 the most severe case, and we are now left with the worst choice of our lives. Would appreciate some advice.
Hi Rick. I am sorry to hear of the situation you are in. I can’t imagine that any of us really understands what you are going through. We each have our own story and I can’t really say that I’ve heard of one like yours. Most of us find out about the condition of the child after the birth or some time after. I’m sure we all have our own opinions, but ultimately it is your decision on what you want to do. Please reach out to me directly if you want to talk about it further. I will help in any way I can.
Dear Rick,
I am sorry to hear about the news you were given. Although I can not understand exactly what you are going through, we were asked once a week during our ultrasounds if we were sure we wanted to keep the baby. I always was shocked by this question because no one had any idea that we were having a WHS baby or that anything was definitely wrong with her. I have no experience with heart problems but I know some other WHS parents have gone through some heart surgeries with their children.
What worries me the most with what the doctors are telling you is that she has the most severe case of WHS. I am not sure how they can determine that because I know of children who have a large deletion in the 4th chromosome and are doing so many more things than my child who has only a microdeletion. I also question the research doctors are given about WHS because it never seems up to date. I understand you are gonig through a difficult time but please do not feel like you are alone. If you would to be connected to other parents or would like to talk more about anything please don’t hesitate to ask!
Rick –
Your post has really resonated with my husband and I. Kevin, the ‘webmaster’ of this site is my husband, and we have three children – 3 yr old boy, 2 yr old girl (Kendall, and a 1 yr old girl. Kendall was diagnosed with WHS when she was about 9 months old.
This is probably the most devastating news you could have received, and I am so very sorry to hear of what you and your partner are going through. If I’m not being too forward, what choices are the doctors giving you at this time? Are there any at such a late point in the pregnancy? I too wonder how the doctors can diagnose the ‘worst case’ without having actually seen her. Did they do a FISH or any other type of chromosome analysis? Even if they had and detected a large deletion, the kids vary so much that there really is no way of knowing what she will be capable of until she is actually here. Even then it’s just day by day.
My heart and prayers go out to you, Emma, and your daughter. Please feel free to contact either myself or Kevin if you’d like to talk live on this. We are by no means experts nor do we have answers-just know you are not alone in this.
Rick-
I am a developmental therapist who works in early intervention (birth to three) with babies and toddlers with special needs. My heart goes out to you and Emma. You have been given such devastating news about your baby before you have had a chance to see her, know her and fall in love with her. This is certainly the “down side” of scientific advancement in prenatal care. I work with three little girls with WHS diagnoses. Two of them are almost three years, and one is just 15 months. Each of them is very different in terms of development, though they do share some common physical characteristics. Like the parents above, I do not understand how the doctors can “rate” your child’s potential at this point. The heart problem as well as the cleft pallet are common birth defects, but WHS is very rare and not well understood by most doctors. I hope sincerely that you have the support you need during this difficult time. Please know that the parents who are accessible on this site will be your strongest allies and supporters. My prayers for a safe delivery and best outcomes for your little Ruby.
@KevinO
Hi Rick. I am mommom to Carl,,who also has whs , and he is now 2 1/2 years old, Please read Carl’s dstory at http://www.caringbridge.com….angelbabycarl and look at the pictures. My name and email is listed there so you can email me afterwards if you want or just post a comment. Carl had open heart surgery last year and is doing well. Never give up..This is your trip to Holland and although at times exciting, also enjoyable. From grandma who made the CHOICE to raise Carl and has never regretted it.
You took me back to a time that seemed ages behind but really it was not too long ago. Your video serves as a reminder of what progress you, your family, and most especially your child have accomplished in this present… so too with all of us WHS families and our children. I am rooting for each and everyone of us. Thank you for sharing!
Hi Rick!
I want to share my story with you too. I had a perfect pregnancy until my 8th month. From that time onwards devastating news aboput my duaghter just kept on coming one after the other even if we have not met her yet… even if we have not actually seen her yet. Abortion was an option thatdid cross our mind but we choked on the idea of actuially doing it. We already love the baby growing inside me… and we vowed that come what may we will love her to pieces. We will love her more inspite of all the hurt that we felt then.
We prepared ourselves for the inevitability that we will be having and raising a child with special needs. about 3 weeks after she was born we received an uofficla diagnosis of her condition… wolf hirschorn syndrome. A syndome i have not heard of before nor have encountered anyone with it. It was heartbreaking. In the several weeks that followed the diagnosis, i had to go through a lot of dark monents. It was not easy. BUT…. eventually i did learn how to see my duaghter way past the syndrome. I came to see her beautiful face without noticing the NG tube. And she is beautiful! Your daughter I’m so sure is beautiful as well. Give her a chance to meet you abd mellt your hearts. The experience goes beyond what a typical parent goes through. The ups and the downs…. but in there is no JOY like the one that you will experience when you move past loss that you may be feeling today.
It is going to be a “journey”…. it is going to be a challenge… it is not going to be easy everyday, but it will be WORTH IT!
Hard as it may be, you will be told a lot of the “nevers” that your daughter will be going through, but BELIEVE that not all those “nevers” are entire TRUTHS.
My daughter is now 4 months old. She may not have made great strides in the developmental ladder but she has made progress and has the potential of becoming more of the person she is going to be. She loves to smile too. A happy contented little bug that reminds me everyday of the most essential things in life.
Be strong. My thoughts and prayers will be with you and your partner and your baby.
Al of us WHS families will be here to support you.
what an amazing video! i want to learn how to make one for my daughter who has WHS… do i need to buy software? what a beautiful family.
Hi rick, i just wanted to say best of wishes to you and your partner and i had to make that same decision with my daughter, although it was easy for me to say no thanks to terminate, you should do what you can handle. My daughter Karly is the Happiest most loving baby ive ever seen. she is almost 2 in june and i wouldnt feel complete without her. its been a long road with many forks in it, but id have to say i wouldnt change it for the world, these children are amazing and all who have the privilege of knowing them can tell you that they have changed their lives forever. there are many early intervention programs now that help your child excel to be all they can. my daughter started the week she got out of the nicu and has had steady progress and her favorite thing to do is cuddle and play with her big brother. they are such angels, i hope you find the support you need and if you ever need to talk about anything you can e mail me. josephsmommy86@yahoo.com
Hi! I used a program called movie maker that was came with my computer. One of my students showed me how to create the slide show. I think it comes with most computers. Thanks for watching!
Hi, Kevin…thank you for that video…it was beautiful. It brought back a lot of memories of my daughter, too at that age. She too spent 3 mos in NICU. You’re daughter is beautiful.
Hi, Rick,
I am mother to 4 children, my only daughter, Amber Bear is 11 years old the end of this May. All I can say is that your story hits home. The doctors told my husband and myself the same stuff, but that our daughter might have Trisomy 8 and sent us to counseling and asked us to abort and even do an amniocentisis, which i refused and glad i did because it would have put me into VERY early labor. My entire pregnancy was hard and labor was worse. I ended up delivering 6 weeks early with an emergency c-section. While the entire process was scary, my husband and I agreed to leave it in God’s hands….and we’re glad we did. The dr’s told us our daughter would also be a “severe case” and she has a LARGE deletion of the “P” arm and is part of the rare 10% group that has this much removed of all WHS children. While my daughter has the mentality of a 3 mos old, can only roll, and sit up…(cannot walk/talk/or comprehend) she is our WORLD!! Please think hard about trying to allow your child the opportunity to live. It might be the best decision you ever made, but it will definitely be the hardest!! God Bless.
I did forget to mention one thing, my daughter too had a hole in her heart, not a large one, but she had 2 holes. An ASD and a VSD, we were actually told after birth that both could close on their own without surgery and after birth and 5 years later, the Cardiologist actually dismissed us saying they both closed and we were not needed to follow up with Cardiology again unless she had heart problems. What a relief!! It’s hard to say completely via ultrasound (I’m a nurse… i know) the extent of the conditions, but make your decision with caution!!
Hi Rick, I am mum to Isabelle who is nearly 12 I gave birth to Isabelle at 24, I found out when Isabelle was 6 days old, problems were discovered very late on . I see you are under Guys Hospital I live in nw London, if you ever wanted to chat or anything let me know. My Isabelle is classed as severe learning and physical disabilities but she is a very happy loving but stubborn child and has learnt to walk any ? please contact me Sarah
What a beautiful video! This is exactly what I want to do with Juliana’s pictures. You must be really creative though… all the quotes & thoughts went so well with the photos & the song! I have wept tears of joy & even a little sadness since I found this website. I live in the present with Juliana. She has changed so much over the past 7 years in so many ways that I could have never imagined when she was just a little baby. I can honestly say that we have had a wonderful life with her. There have been a few things that have gotten harder as she has gotten older that I never thought of when she was a baby. Like dealing with her size & her not ambulating on her own independently yet. She is getting there, but she is heavy to carry! She weighs 45lb & is about 47 inches tall. She wears a girls size 6 clothes! The other tough thing with Juliana is that she bumps her head or hits her head with her hand. She does this as a self stimulation thing, but also as a means of self expression. She hits herself in the head when she is really happy like “I could have had a V-8”! She also hits her head repeatedly when she is upset. I believe it is her way of communicating her unhappiness. She hits herself & then starts to cry. Why she does not cry without self hitting I do not understand? This is why she wears a helmet. It also helps if she is to have a drop seizure to protect her head.
I guess this is the kind of information that would be helpful to post here on this blog. But, I do not believe a lot of kids with WHS have these issues, because many kids are pretty small & they tend to be very mellow or easy going. Juliana is too at times, but she also knows what she wants & lets us know it!
Thanks for the movie. I enjoyed it tremendously. You did a great job. I missed it the first time I read about your family. This time, I am going back to the first stories posted about each child. Amelia’s story brought me to this site. I will always be grateful to her for that. Your boys are charming, so gentle with their fragile sister.
Your post generated a great deal of discussion surrounding Rick’s decision. Do you know how things worked out for him?