We are new to the Wolf-Hirschhorn family. Our daughter, Paige Elizabeth, was born on April 27, 2015. She weighed 4lbs, 3 ounces. We found out last Thursday that Paige has been diagnosed with WHS. She is currently still in the NICU due to feeding issues. We are pretty certain she will have to come home with a GI tube, but we do not know when.
We didn’t find out Paige was a girl until she was born. We wanted it to be a surprise. Starting at 20 weeks, my OB mentioned a concern of the baby being small. He wanted to give the baby four weeks to see if the size caught up with itself. I was remeasured at 24 weeks, and unfortunately, the baby showed that it was under the 3rd percentile. At this time, the doctor said it was something called IUGR. I am otherwise healthy, so the doctor said it was probably due to my placenta not doing it’s job. At about 27 weeks, I started being monitored twice a week and the doctor wanted to remeasure every 3-4 weeks. The next time I was measured, the doctor was even more concerned that the baby wasn’t growing, so I had to get monitored at the hospital and also get some steroid shots to help the baby’s lungs mature in case I had to deliver early. From then on out, the doctor had me coming into the office three times a week. Every day I would have a non-stress test and on Mondays and Fridays I would also have a bio physical profile. I felt like I was being monitored so closely that nothing could possibly go wrong.
My doctor said I would need to deliver at week 37 due to an increased risk of still births in IUGR babies. My c-section was scheduled at 37 + 1 day on April 27, 2015. It was a very nerve wracking wait before the surgery. My husband and I got nervous with every minute that passed and finally it was time. When she was delivered, it was silent at first, but as they did her assessment, we did hear her crying. It was so exciting to hear that she was a girl. We already had one daughter (age 7), and we love every second of raising her. We truly did not care if it was going to be a boy or a girl. The neonatalogist arrived and looked her over. He had mentioned a skin tag on one of her ears and said they would need to take her to the NICU immediately.
They told us afterwards that there could be some genetic / chromosomal issues, so they will have the geneticist look her over and also draw blood to get started on testing. We were very nervous, but at the same time, I was on a lot of drugs from the surgery. I kept telling my parents that I wasn’t worried and that everything was going to be ok. I was obviously in denial. When I went home from the hospital 4 days later without Paige, I starting to really understand the situation and it became a lot harder.
The geneticist told my husband the next day that she thought Paige had a syndrome called Russell Silver Syndrome, but she was going to get the test results back just to be sure. Of course, I went into mommy mode and researched that syndrome. I even reached out to a non-for-profit organization to see about attending a conference in July. It is true that a worried mother does better research than the FBI.
After a week and a half, the hospital finally had our results in hand. We sat down with about 8 other people including the geneticist, neonatalogist, nurses, chaplains of the hospital, and palliative care. It was a meeting that would change our life forever. The geneticist said that she was wrong about the initial diagnosis, and Paige actually had something called Wolf-Hircshhorn Syndrome. She went over how, why, and what next, but of course, the room was just spinning for me and my husband. I cried and he was just in pure shock. We had felt many feelings over the next couple of days. Mostly sadness, guilt, shock, grief, shame, anger…and so many more.
Things got a little better for me on Mother’s Day when I found someone locally that had a 4 year old daughter with the same syndrome. I spoke to her briefly and it was just so good to hear from someone who is living with the syndrome. I knew life would go on.
Now, our mindset is to do our very best to give Paige the best life possible and provide her all the tools she needs to live to her full potential. We truly look forward to all the joy she will bring into our life and others. We know it will be an emotional and physical roller coaster ride, but we’ve always said that we make a great team, and there is a reason why this child was given to us to take care of.
Welcome to the family. Im mommy to Liam age 3. Paige will do great things you will see! Feel free to find me on facebook or send me an email. Cdonovan524@gmail.com
Thank you for sharing your story. The diagnosis can be such an awful shock. It does get better! Paige will bring you just as much joy as your first daughter does.
Heather (mom to Frank, age 5)
Hello dear girl, My daughter Natalie is 26. She is healthy, is mentally about 2 and doesn’t speak, but she is the delight of our lives. She is happy, goes to a wonderful day program from 9-2 pm. She is loved and accepted by her brothers and sister, and her neices and nephews. she has anxiety issues, but we have medication. She has made us better people and she is dearly loved. I remember all the feelings you are having, but God has helped us, and she is a blessing to us. God bless you.
welcome to the family Paige!! My Dominique will be 37 this month. She is my daughter,buddy, best friend, companion; I LOVE the life we have led and would not change a thing.
She’s beautiful!!! What a darling baby girl! I pray for strength and wisdom for your family! Check out the wolf Hirschhorn Facebook page lots of advice and help along the way! We had an OT and lactation consultant show us some holds for bottle feeding so we could get our daughter Destri to finally eat in the nicu. Also we had to use a pigeon nipple from OT for the first 6 months, the regular nipples would work since she had a submucosal cleft pallet. All the best!
Jim and Keely, Congratulations on your new baby girl. I wanted to reach out to you and offer any support we can. We just went through the same exact experience (almost to the T) with our daughter Jordan who is 5 1/2 months old and would be happy to share our experience with you both. She needed a g tube in order to leave the hospital and honestly it’s been such a blessing in disguise because of things that have come up with her later. She is an absolute joy to our lives and such a happy girl. We look forward to what she will accomplish! My email is firstname.lastname@example.org if you would like to talk.
You and Jim are amazing. I know you will handle this with amazing grace and abundant love. Paige is in our family for a reason and we will all learn so m ch about unconditional love! xoxo
Jim and Keely, congratulations on your new baby girl! I wanted to reach out to both and offer any support we can. My husband and I just went through the same experience (almost to the T) with our 5 1/2 month old daughter. We would be happy to share our story with you both. She was in the NICU for 32 days and ended up having to get a g tube in order to go home-due to feeding issues. We were terrified at first but once we got home, it wasn’t too bad and honestly was a blessing in disguise because just a few weeks ago we had a swallow study done (she was taking a bottle by mouth during the day and we just used the g tube at night) but found out she was silently aspirating so we were told she couldn’t drink orally for 3 months-if we didn’t already have the g tube she would have had to go in right away for surgery. We also had a nissen done for reflux when she had the g tube which was also good to have done at the same time rather than go in later for another surgery. She is an absolute blessing to us and is such a happy girl. We look forward to what she will accomplish! My email is email@example.com if you would like to talk. 🙂
Keeley & Jim,
You do make an amazing team! In the weeks and months to come you will adapt to your “new normal” and I know you will do it with amazing grace, faith and love. Paige Elizabeth is a blessing to everyone ~ and we will all become better for having her in our family. Love you – Aunt Lisa
Thank you for sharing your story. I’ve known Deb since I was a baby and I’ve been praying for your baby.
This is so great you are reaching out and that others are reaching out to you! You and Jim are amazing parents so I’m sure Paige will do great things. And Jorie will be the best big sister! You have some challenges ahead but with all the family support you will have (especially Patti!) Paige is in good hands and will surprise you all!
Welcome guys! Boy, your post brought back a lot of memories. I will never forget that initial meeting with the medical staff, and hearing all of the things that our Elsa would never do. Three years later, she is on her way to defying those grim statistics. The grief and sadness that entered our life that day was with us for a while. It can be such a heavy cloud. Family and friends, and their desire to understand the syndrome and support us, lifted us out. This website, and the amazing families found here, was another huge lifeline. We all go through trials in our lives, and WHS will probably be one of your greatest. It has been for me. But the one thing you should never feel is alone. We are all here with you and for you, and will be rooting on Paige EVERY step of the way!! If you have any questions, holler at me at firstname.lastname@example.org.
She’s precious! You’ll find that at a certain point in your life, you’ll worry less…it’ll take a while. We just get to enjoy our baby’s as baby’s a little longer than others. Not everyone can say that. It’s not a bad thing.
Very Belated Congratulations on the birth of your beautiful baby girl
Paige. Your birth story is ‘normal’ to everyone here. Of course there is a good reason Baby Paige was given to you but don’t be surprise if one day you look back and see she did a better job taking care of you than you did taking care of her. That’s how
I see it, thirty five years later. Life with WHS is as full of joy and sorrow as life with any other child. It is just different. I would never trade Rochelle in for a ‘non-WHS’ child. I am very happy with the child I got! I am sure you will be too. Your sharing is a great way to start. Thank you.