A Project Celebrating Differences and Triumphs
Fletcher is Beautifully Different
Meet Fletcher. This little guy is so amazing and sweet! Fletcher was born with Craniosynostosis, a Congenital Heart Defect, and Pierre Robbin Sequence. He has been through more in his little time here that most people do in their entire life, and a beautiful smile remains on his face through it all! He is truly incredible, and Beautifully Different!
Fletcher’s family learned of his differences within just a few days after he was born. He has Craniosynostosis, a Congenital Heart Defect, and Pierre Robbin Sequence.
Craniosynostosis is a birth defect in which one or more of the fibrous joints between the bones of the baby’s skull (cranial sutures) close prematurely (fuse), before the baby’s brain is fully formed. Brain growth continues, giving the head a misshapen appearance. His fusion was the sagittal suture. Fletcher has had two Cranial Vault reconstruction (CVR) surgeries. His first surgery he was hospitalized for 3 days and his second he was there for 5. Both surgeries lasted 6-8 hours long.
Congenital Heart Defect
A congenital heart defect (CHD) results when the heart, or blood vessels near the heart, don’t develop normally before birth. There are many forms of CHD, anywhere from very mild to fatal. For Fletcher, his is mild. He has three holes in his heart that require monitoring and one that is looking like it will need surgery on.
Pierre Robbin Sequence
Pierre Robbin sequence is a condition present at birth, in which the baby has a smaller than normal lower jaw, a tongue that is placed further back than normal, and an likely a cleft palate. This combination of features can lead to difficulty breathing and problems with eating early in life. Pierre Robbin sequence may occur alone or be associated with a variety of other signs and symptoms. Thankfully, Fletcher’s case is mild and he did not have a cleft palate.
A Day in the Life of Fletcher
Fletcher’s day is pretty typical to that of most boy’s his age. He has been affected by his differences with little things like eating, growing, talking and developing. He is doing all of those things but each has and continues to be something that he has to work at more than a typical 3 year old boy. Fletcher is lucky to have a really big family, so he has an amazing support system to help him!
Tough. Sweet. Determined.
Fletcher has the absolute best personality! He loves people and especially babies. Fletcher is so tender and sensitive to people hurting. He was a little shy at first but warmed up quickly with some help from his Mom and Big Sister! You can tell just from his interaction with his family that he has all the love and support in the world, it was an amazing thing to experience.
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