In 2007, the NFFR was given a gift; The Cohen Family gave us permission to follow their son David’s surgical journey from start to finish.  They gave the NFFR unprecedented access into their day-to-day lives as they navigated their second jaw distraction surgery.  It is not common to have this type of documentation; we normally follow families and children after their treatment is complete.

In order to fully understand what the Cohen Family has been through since David’s birth in 1999, we will share with you the story from the beginning. David was born with Pierre Robin Sequence, a rare genetic disorder that affects the development of bones and connective tissue in the body that causes numerous complications. In David’s case, because of the small size of his jaw, his tongue was sitting over his airway making it impossible for him to breathe. Just 10 days old, the doctors decided to perform a tracheostomy, as David was still unable to breathe without assistance.  At 5 weeks, a GT tube (gastrostomy tube) was inserted because he was unable to take in sufficient nutrition by mouth because of his soft palate cleft.

David had his first jaw distraction at the IRPS, under the care of Dr. Joseph McCarthy and his team, when he was just 8-months-old. This process involved cutting his jaw bone on each side and inserting metal bars and screws. This allowed for new bone to form in the gap.  Following surgery, each day his parents turned the screws on the device in order to allow for new growth of approximately 1mm per day.  This twice daily task continued for about a month until the jaw had been sufficiently lengthened to enable the tongue to clear the airway.  Three months after the metal bars were inserted, the device was finally removed and he was cleared for his next procedure.

The next step was to close the Cleft Palate when David was a year old. In this procedure Dr. Court Cutting took 3 layers of muscle from the roof of David’s mouth and sewed them together to artificially create a palate.

Today, David is a healthy and happy 11 year-old.  As said best by his mom, “David’s story is the story of a courageous little boy who taught us so much.  Through his strength and his permanently sunny disposition, he enabled us, his family, to live these trying times with optimism, hope and a great deal of laughter”.

We are grateful to the Cohen Family for opening their hearts and their home to the NFFR.  Special thanks to all those who made it possible to share David’s story: Filming Funded by: The Moinian Group; Reproduction & Distribution Costs by: Richard Baxter; Aidan Quinn; Tom Baxter; NYU Langone Medical Center; American Museum of Natural History; and Max Curious Productions.

To see the finished Video click here and click on David’s Story.

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