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Layton's Story

Layton with Mom and Dad

How did you discover that your child would be born with a cleft palate? 

Layton’s father, T.J, has a genetic disorder himself that put Layton at a higher risk for cleft lip and palate. We knew that it was a high probability that he might be born with the same complications. At our 20 week anatomy ultrasound, we were sent to a specialist for more detailed imaging. The scan confirmed the presence of the cleft lip and palate. On the same day we were referred to Greenwood Genetics. From there we were connected with Greenville Hospital System, a supportive care team, nurse practitioners, and a social worker. From the very beginning we felt extremely supported. By the time he was born, we had already met neonatal professionals, a chaplain, his nurse practitioner, and his future surgeon.  He is now 8 weeks old!

How did you learn about Easterseals Early Intervention?

Due to Layton’s father having similar issues as a child, T.J was actually a client of Easterseals Pennsylvania over 20 years ago! We went to the Babynet office for our referral and when presented with a choice of providers, Easterseals was a familiar name and felt like an obvious choice. I immediately recognized the agency from my childhood.

Tell us about your early intervention journey so far and what you hope to accomplish with Easterseals assisting you?

The initial assessment has been completed and we are meeting today with our Early Interventionist to put together the IFSP. We are currently receiving occupational therapy with Kidnetics to work on feeding but hope to get an in home provider soon. Because the medical professionals started connecting us with resources so early, it was great but felt overwhelming. It’s been hard to keep dots connected and all our balls in the air. Especially being first time parents. Having an EI to bounce things off of is going to be a comforting resource. If a therapist says this or a pediatrician suggests that, having an EI walk the journey with us and guide us will be nice. 

What kinds of support have been most helpful and what does the future hold for Layton’s diagnosis?

From the very beginning of learning he would be born with a cleft lip and palate, we were referred by maternal fetal medicine to Dr. Debrux for surgery. Layton is scheduled for the lip and nose repair on August 10th of this year and will undergo the reconstructive palate surgery once he is a year old.  We were referred to Kidnetics for OT right out of the NICU. Greenwood Genetics has also seen us and would like follow up at 6 months. Interestingly enough, Layton is a rare case where he carries both the physical characteristics of the cleft palate and lip and also possibly the genetic markers. Greenwood Genetics is excited to connect dots with the two parts that are rare to find in a child with a cleft lip and palate.

What kinds of things have you struggled most with?

For the most part, Layton is super laid back and patient with us being new parents. Sometimes he stares at us with his big blue eyes as if to say, “it’s okay Mama and Daddy”. He is super content and, with more awake time, growing into a fun and happy little boy. Our biggest struggle at this point is feeding him, which is frustrating for both Layton and us. We feel like we take a step forward and then we take a step and a half backwards. Layton has all the regular feeding issues babies have (reflux, weight gain, etc) but in addition to that we face challenges such as not being able to suck, having an open airway, and not being able to close his lips. The surgery should help and we are learning strategies and tactics through OT but this is still our biggest struggle. With Early Intervention in place, we are excited to gain more resources and support as we navigate through Layton’s needs.

LR
Mom and Layton

Below are newspaper articles that feature Layton's father. He was a poster child for the Easter Seals Society of Gettysburg which is now called Easterseals Western and Central Pennsylvania.

ES Poster child
ES Poster child 2

 

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