I am a 37 yearold mother of an 18 year old who is 20 weeks pregnant. We discovered that the baby has a congenital diaphragmatic hernia and chromosome problems to which termination was suggested more than once. Just yesterday we received the results of the Amnio. Its WHS. We of course had never heard of it and based on the questions I asked the genetisist ,she hadnt either.We received the “oh so sorry time to terminate face” ..once again termination was mentioned,to which my daughter explained yet again is NOT an option. We took our sad news home and tried to sort it out. I was feeling hopeless and angry and I have a daughter looking at me for how to react. I know this little angel has been dealt a difficult hand…several it seems, but I just have faith she will overcome. Every medical professional and every website made our situation seem all the more hopeless…until this site. What can I say except first God blessed us with a lil girl who I believe will fight her way through this and then I discovered this site which I believe will help me fight my way through this. Thank You for all your wonderful stories and insight.
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I am a 47 year old with a 19 year old son with WHS. I will pray for you,your daughter,and your grandchild.My son has brought great joy to so many people. He is so joyful and loving! It’s not an easy road-just go one step at a time.Follow your heart.
It sounds like your daughter and I are in a similar boat. I am 28 weeks pregnant and found out 4 weeks ago that our little girl has WHS. The first couple of days and weeks are very hard and they continue to be, but everyday seems to get a little better. Although, they cannot find anything else “wrong” with our daughter at this point, the fear of the unknown lingers. I continue to place my trust and hope in the Lord, knowing He will give me the strength I need when the time comes. This website and the blogs of other WHS families have helped me tremendously. I think I’ve read nearly every single posting and comment this site has to offer. Unlike you, our doctors and genetic counselor were very supportive and never once brought up termination. We would have never gone down that road regardless, but I am thankful that it wasn’t presented and that others after us facing the same situation will not be pushed in that direction. I am looking forward to loving my little girl for who she is and the joy she will bring to our family. Hang in there. I will be praying for you, your daughter and granddaughter.
I am the administrator of this site and I am always so glad to hear that people faced with WHS find it and are able to get the information they need. That is the sole purpose of this site.
The best thing about the situation you both are in is that you can prepare for the life of your child before they are born. Knowing what you face will only be of benefit to you and your children.
Let me know if there is anything I can do to help. We are all here for you.
I am a thankful mom 54 years old with a 13 year old son Joseph with WHS. There is not one day that goes by that I don’t thank the Lord for this loving sweet precious little boy.
You will find that our children are the closest to God of any human being on this earth, one of Gods special ones.
God Bless
Welcome! We found out that Magnolia had WHS when I was 26 weeks pregnant. During the pregnancy we prepared for the worst and hoped for the best. I also read every blog and site available. We met with doctors, toured the NICU and had a plan in place for when she arrived. Magnolia was born on Oct. 5th, 2010 via c-section at 38 weeks. She weighed 3lbs 7oz. She came home from the hospital after 18 short days. She is currently 10lbs and doing great.
I would be happy to answer any questions that I can or lend support.
http://iwontweargrey.blogspot.com/
~Hilary
God Bless you both for the faith and courage to face this new challenge in your journey of life. My WHS little girl is now 7 years old. She has surpassed everything the dr’s and research said when she was born. Each of our WHS children are so unique. You need to just wait until birth and see how God created yours. Had I known 7 years ago what I know now, I would have cried a thousand less tears and smiled a thousand times more. At birth she was described as “dismorphic” with a “broad beak” and a “helmet forehead”. All words that crushed me. Now I can’t go anywhere without people informing me how beautiful she is. She is a gorgeous china doll and gives a whole new meaning to the word petite. She may not speak words, but communicates with us constantly and has completely captured our hearts!!! A true blessing to us all.
Try your best to remain strong and take it one day at a time!
So glad that you have found comfort & support
in the stories here. The support I’ve received from other families with children diagnosed with WHS has been the best and most comforting throughout our journey.
Our son Ryan will be 5 in October & is doing great now, much better than they told us he would. The unknown has been the hardest part through it all, but as he’s gotten older & needs/challenges have become more known to us it’s
gotten easier but the most important thing is that he’s always felt like a blessing and never a burden. Best wishes as you help your daughter nurture her little miracle before and after birth.
So glad you have found this website. My son Ryley is 9 years old and he is just awesome. Our WHS community is huge now and at the tip of your fingers you have other Mums or Dads who can reassure you, comfort you or cry alongside you.
We wouldn’t be who we are today without our gorgeous Ryley. I won’t pretend there are days when it all seems too hard. Because there are certainly plenty of them! But it is those days that we have each other.
All the very best.
Anna
http://www.blogaboutabloke.com
Australia
My 18 year old daughter had a WHS child. We did not get our diagnosisuntil afer his birth. It did not show up on the AMmo. Our angel lived only 4months but was a joy every second he was here. Our Fatheralso helped us faceeach day. You willnot regret carry your angel to term and delivering her. You will have some hard times butGod will help you through each of them. If you need to ask questions please contact me on here and I will help any way I can. I will keep you and your family in my prayers.
Welcome. Throw those old websites away! They will do nothing but cloud your heart with fears. Not that we don’t all have them at some point or another – but what he internet says about WHS is NOT the reality. You are welcome to read my blog also – http://www.alittlesomethingforme.com I also made a video right after Alexander was born. It is on here somewhere… and it is on youtube. If you search for Wolf Hirschhorn Syndrome you will find it. It describes some of the feelings a new mom experiences. Tell your daughter she was chosen. chosen to be the mom to an amazing baby. Lots of love – Kristen and Alexander
Bless you for realizing that your daughter has a precious baby inside of her who will change your lives for the better. It amazes me how “professionals” and “friends” treat an “imperfect” baby as damaged goods, not valuable, and as babies that should be killed and thrown away. If they would only realize that we are ALL imperfect-expcept for the precious baby your daughter is carrying! Your granddaughter will exhibit only purity and love while struggling to survive and grow. She is perfection on earth. A miracle!
We have a daughter who is 18. She was not diagnosed till 9 months after her birth. Her name is London and she is an amazing girl. Though she cannot speak she has taught me more about life, myself, others and the world then I would have ever learned with a “normal” child. My love for her is a powerful force. Her character humbles me every day. Her strength keeps me going during the difficult times. Her struggles and suffering bring me to my knees over and over again. But her smile and occasional laugh are the greatest joy I have ever known. Her sweet smile and rare laughter provide the hope that gets us through another day and makes our life worth living.
I am so glad you found this group. We have a daughter who is 7yrs old with WHS. She is the joy of our lives. Her first year was tough with lots of reflux & irritability & her first seizure at 11mos. But we get so very much joy & love from her. She gives the best hugs ever & is so happy. We are truly very blessed by her. She wasn’t diagnosed til she was 15mos old. The Lord has chosen you to be blessed by this little one. He wouldn’t pick just anyone. He knows you will be the best family for her & that you will make some great changes in this world by having her in your family.
Hi my name is Stephanie. I am 21 years old and 36 and 1/2 weeks pregnant with a little boy who also has a congential diaphragmatic hernia and whs. The termination option was thrown at me several times and I never once thought of it. I told everybody this baby is a blessing from God and I will not stand before Him and have Him ask me why I killed a blessing of His. Its not gonna be an easy road especially with the hernia our angels have. Clays hasn’t got worse and is not as bad as they thought at first. If your daughter would like to talk to me I can tell her what I have experienced so far with everything. My email is sclayton1122@gmail.com. Be strong for your daughter my mother cries more than I do on my sad and scared days, my dad carries little hopes with him and that makes it harder on me. Pray hard Trust in God. All things are possible through Him. No matter what He will get us through this.
Sincerely,
Stephanie and Baby Clay
Praying for you young brave moms and your families. You will teach the world a lot and I’m thrilled to see your stamina. Every day will make you stronger, even the tough sad lonely ones. You can have those days where you are carried and supported. Get help from professional therapists too for the extended family too–you can do it but don’t fear the days you can’t. Life will provide safety nets and love will carry yOu. I’m thankful for these sites and finding each other. The issues will be different but also similar. My son has Down syndrome which is a larger community but there are many kids with DS that have feeding issues and most all have language delays etc. Connect online and Facebook with us! Hugs, peace and prayers and you can and are doing it!!