Apert Syndrome

#ApertSyndrome

My 10-month old daughter has Apert Syndrome with a Type 3 skull presentation. Her surgical team wants to do a posterior cranial vault reconstruction with distractors in about a month. As her parents, we feel cautious and have sought second, third and four to opinions. One of these is from Dr. Fearon of the Craniofacial Center in Dallas, TX. He disagrees with my daughter’s surgical team at Riley Children’s Hospital of Indianapolis, IN. He thinks she should have a posterior vault remodeling without the use of hardware. We are unsure how to navigate options and whom to ultimately go with. Any similar experiences? Please help! #posteriorvaultreconstruction #posteriorvaultremodeling

I’m a 24 year old first time mom to a baby with ApertSyndrome. I had the best pregnancy.. no morning sickness, no body aches, and no sign of a baby with any health problems. It wasn’t until I started bleeding at 7 months that I became concerned. I went to the hospital and was told that they didn’t know why I was bleeding and that I needed to stay until they could find out why.

After spending 10 days in the hospital my baby’s heart rate began to drop and I had to have an emergency c-section. I was terrified!!! After I heard my baby cry, he was whisked away and gone for what seemed like forever. I kept asking the nurses where is my baby?? They brought him out and asked did I want to see his fingers and toes. I told them yes and that’s when I realized that he had complete fusion in both hands and feet… I was out of it but I fell in love with him and wanted to hold him. I was told that I couldn’t and he has to go to the NICU. Little did I know, I wouldn’t be able to hold my baby for another MONTH.

The fact that I had him in the middle of a pandemic, my child’s father was only able to see him one time in the NICU and I was told I would be the only one allowed to see him after that. Fast forward to today, we are still in the NICU four months later and no one in my family has gotten to see him person. None of the doctors and nurses that we have had so far has ever worked with a baby with ApertSyndrome and I feel like they categorize my baby instead of treating him like the individual that he is. I work from home so I’m grateful that I can be with him everyday. He’s growing fast but he still struggling with breathing. He has to get a trach, and a possible Gtube even though he doesn’t aspirate and he loves his bottle! Has any mom that has had a baby with ApertSyndrome gotten a trach without a Gtube? If so please let me know! If he does get the trach we will finally be on our way home after four long months! Please keep us in your prayers. #RareDisease #ApertSyndrome