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.