Cleft-Craniofacial Awareness Month: Abby’s Journey

This is my daughter, Abby. She is almost 6 years old and enjoys things that many other 6-year-olds do, like playing outside, swimming, cheering for the Pittsburgh Pirates, playing dress-up with her sisters, reading books (especially Fancy Nancy books), watching movies (especially Disney movies), and doing anything artistic. Right now, she is super excited for her birthday because she is going to get her ears pierced. Abby is thoughtful, kind, and has a fun sense of humor. She also happens to have a condition called Pfeiffer syndrome. I mention Pfeiffer syndrome last because, although it impacts her life and schedule a great deal, it is not solely what defines her.

We have been incredibly grateful for our team at UPMC Children’s Hospital of Pittsburgh who has taken care of Abby since she was a newborn and has ensured that she has the best care possible so she can enjoy all the things I mentioned above.

Since she was 3 weeks old, Abby has been seen by the craniofacial team at UPMC Children’s Hospital in collaboration with ophthalmology, ENT, pulmonology, and orthopedics (among others, as needed). We appreciate how they work together not just for Abby’s care but to also make things easier on our whole family. For example, on Abby’s big appointment days, we stay in one room and the doctors, PAs, nurses, and specialists come to us. This has been especially helpful on trips when Abby’s two younger sisters are with us; getting settled in one room is much easier than trekking around the hospital for all those appointments! Her team is also wonderful with coordinating for surgeries.

Abby has endured 11 surgeries, but, to be honest, I don’t technically know how many different procedures she’s had. Her team coordinates this so multiple procedures take place each time she’s put under anesthesia; I just say 11 surgeries because she’s been put under 11 times. These surgeries have helped decrease her intracranial pressure, have allowed her to breathe better, have corrected her hip dysplasia, and much more. Abby has more surgeries ahead of her, but we’ve been enjoying a little break for now. In fact, we are getting close to celebrating two whole years without a surgery (knock on wood!)! I still think Abby sees the hospital as a second home, though, and she currently says she wants to be a doctor.

I’m not at all surprised that she wants to be a doctor considering the amazing team that cares for her. They make it clear that they see her as more than just a patient. The best example of this is from last November. Our family held an advanced screening of Wonder as a fundraiser for Children’s Craniofacial Association, an organization that supports individuals and families affected by craniofacial differences.

Dr. Goldstein, Abby’s craniofacial plastic surgeon, attended the event and took part in the Q&A after the movie to help people learn more about craniofacial differences. Only at the very end of the event did he tell me that his wife was 9 months pregnant! It meant so much to us that he came despite his very busy schedule, both professional and personal.

It’s true that managing Abby’s care and going through all the appointments and surgeries can be very stressful. However, we are incredibly blessed to have such a wonderful team to help us navigate it all, and we feel confident that she is getting best care possible. Abby’s doctors–Dr. Goldstein, Dr. Nischal, Dr. Jabbour, Dr. Davit, Dr. Grudziak, and Dr. Schuster–and their staff exemplify Children’s patient-centered approach. Thank you, Children’s, for giving Abby the ability to thrive!

To learn more, visit the Cleft-Craniofacial Center page.