ACPA Family Services

Cleft-Craniofacial Community Stories

Eric’s Story

My son, Eric, was born on May 22, 1998 with a unilateral complete cleft lip and palate.  This came as a complete surprise to us because the condition went undetected prior to his birth.  I had never heard of a cleft lip and palate and had no idea what to expect.

As soon as he was born, we heard the doctor tell the nurse to call for a doctor from pediatrics right away.  Soon the room was filled with doctors and nurses checking him out and eventually we got the word that he was otherwise healthy.   Soon after, we were visited by a steady flow of social workers, nurses, counselors and doctors teaching us how to care for Eric.  As a first time parent, I was completely overwhelmed.  It was a scary time.

Eric at 6 weeks

Eric had his first surgery at age 3 months to close his lip.  At 5 months, he underwent another surgery to repair his soft palate and final touch ups on his lip.  Then, at 10 months, the first attempt was made to close his palate.  His doctor faced the challenge of attempting to close one of the largest cleft palates he had seen with little to no usable tissue.  The surgery was unsuccessful leaving a large fistula which would remain open for several years.

At age 8, another surgeon made another unsuccessful attempt to close the fistula.  After the second failed attempt, his doctor prepared us for the possibility that a tongue flap may be required to close the fistula.  This would require stitching his tongue to the roof of his mouth for 3 weeks then separating the two surgically once they have fused together leaving the fused tissue in place closing the fistula.

As time progressed, his doctor realized that the fistula was too large for even a tongue flap and once again, began preparing us for a much more severe procedure which would involve grafting tissue and blood vessels from his wrist to close the fistula.   At age 12, we began preparations for the surgery, including vascular mapping.  In August of 2010, Eric underwent surgery yet again in what was scheduled to be an 8-10 hr surgery.  Three hours into the surgery, the surgeon emerged telling us that due to the use of a palate expander by the team’s orthodontist, he was able to find enough usable tissue to sufficiently close the fistula without grafting tissue from outside of Eric’s mouth.  When he awoke in recovery, Eric looked down at his wrist (which had been marked up with a magic marker prior to the surgery) and saw nothing there.  His first words were, “what went wrong?”  We explained that nothing was wrong, and that this was a good thing!

Three months after the successful fistula closure, Eric underwent surgery for an alveolar bone graft.  In May of 2011, at age 13, Eric was officially released by his Cleft Team and was told that he would have to undergo one more operation – rhinoplasty to reconstruct his nose and nasal passages.

Eric's school picture

In addition to numerous cleft repair surgeries, Eric has undergone numerous operations to treat recurring ear infections.  Eric has endured a total of 18 surgeries, 7 years of speech therapy, and 3 years (and counting) of orthodontia, including an obturator to assist with speech issues.  In 2008, Eric decided to attempt something that he was told by his doctors that he could never do.  He learned to play the clarinet, successfully, even with a fistula!

Today, Eric is a happy, healthy, thriving 13 year old honor student who enjoys sports, and currently holds the rank of purple belt in taekwondo.  Despite years of speech delays, Eric performed his first vocal solo in 2011 during his middle school chorus’ spring concert.

His outgoing personality and positive attitude is an inspiration to everyone around him!