A happy surgical outcome for family of infant with Beckwith Wiedemann Syndrome

Published on: 08/29/2017

Our daughter was diagnosed Beckwith-Wiedemann Syndrome and needed a tongue reduction surgery. We were torn between doing the surgery at our local (large) children's hospital or making the long flight to Miami to see Dr. Perlyn and his team in the Craniofacial Center.


We decided to make the trip, and we are so happy with the whole experience and outcome. Things that were over-the-top-great were:

  • The team's generosity. Dr. Chad Perlyn came in on his off-day due to a concern we had (which was a false alarm, but he was very gracious), and every single person on the team made a point of letting us know we could contact them with anything.
  • Their experience. We felt very secure in knowing that Dr. Perlyn and his whole team (coordinator, speech therapist, nurse) did many of these surgeries every year.
  • The hospital’s care: We were very happy to stay in Miami for recovery, and we were well-cared for during the hospital (laundry! farmer's market! great staff!).
 

Our daughter healed remarkably quickly. Now her tongue fits inside her mouth perfectly and has full range of motion for eating and speaking. It was so amazing to see her chew for the first time in her life 2 days after surgery!

We cannot express strongly enough how glad we are that we went to Miami to work with Dr. Perlyn and his team.

- Alyssa Caulley

© 2019 Nicklaus Children's Hospital. All Rights Reserved.