Mild Pierre Robin Sequence and Cleft Palate Awareness

Claire was born with a cleft palate and mild Pierre Robin sequence. Her family was not aware of this until she was born. The NICU was home for 6 weeks where she struggled with feeding. She was underweight and struggled to take enough milk from the bottle. The first hospital they stayed at was unsure of what to do and thought maybe she needed a jaw distraction and a PEG tube. Her parents disagreed and felt she just needed more time; she was then transferred to another hospital where she was ready to go up a nipple size the next day. She was then able to come home in two weeks. Her family taught her to drink from an open cup at 8 only months old.  Claire had her palate repair done after her 1st birthday and her mother states that her recovery was rough. After the surgery, she blossomed in every way.  She also needed tubes in her ears, and it helped her speech immensely. 

“I want to share this story because I want parents to know how important it is that you advocate for your child because if you don't, no one else will. As a mother and a speech therapist, I want to raise awareness for people who have cleft palates and/or lip and PRS and let parents and children know that you are not alone. It’s important that we raise awareness in not only these conditions but also raise awareness for how our providers (SLP, OT, PT, teachers) play an important role to help these children grow to their full potential. There’s no limit to what these kids can do. They’re God’s gift and a true blessing. They’re perfect the way they are.”

Clarie is a musician on all accounts and can’t wait to start piano lessons! Her pattern was inspired from her love of singing.