April 15th, 2013 | The Heads Up!!! Foundation recently donated $3,000 to the Cleft and Craniofacial Program at Riley Hospital for Children at IU Health. The gift will pay for the purchase of the “Craniofacial Family Notebook” which is given to parents of newborns at their first clinic visit. The notebook contains valuable educational information about… Continue Reading
When they moved to Indianapolis’ near north side almost a decade ago, Luke and Gina Reese could not have guessed how much they would come to depend on Riley Hospital for Children. But when their fifth child Edmund was born in 2005, they were very thankful to have the world renowned medical facility right in their own backyard.
Edmund surprised everyone on a cold December night by coming into the world with a complete bilateral cleft lip and palate. He spent the first ten days of his life in the NICU, with Luke, Gina, and their other children visiting him daily. They even spent Edmund’s first Christmas in the Neonatal Intensive Care Unit (NICU) with him.
When Edmund was about three weeks old, the family met with the Cleft and Craniofacial Anomalies team at Riley. At this initial visit, Luke and Gina felt overwhelmed by all the information they were receiving, but everyone worked together to make them feel able to cope with what lay ahead. In fact, the Reeses found the “team approach” used by the Craniofacial staff to be a comprehensive, reassuring, “nothing-will-be-overlooked” method of treating their son.
Edmund’s treatment would be anything but easy. “I’ve heard surgeons say that repairing a bilateral cleft is not simply twice as difficult as repairing a unilateral cleft,” remarks Gina. “They say it’s ten times as hard.”
Edmund was deemed to be a good candidate for a specialized type of oral appliance called a Nasal Alveolar Molding device (NAM). After nearly four months of weekly visits to Riley for adjustments to the NAM, Edmund was ready for his first surgery, the lip repair, in April 2006. Luke and Gina were filled with nothing less than astonishment at the first sight of their son in the recovery room. “He looked like what we imagine he was always meant to look like,” Gina recollects. “The results were amazing.”
A few months later, Edmund went back to Riley for his second surgery, to correct the cleft in his gum ridge, in which a small piece of bone from Edmund’s rib was placed in the cleft site. There the piece of bone began its nearly ten year process of growing into the existing upper jaw bone, which will eventually facilitate orthodontic treatment.
Just before Edmund’s first birthday, he had his palate surgery, effectively closing the remainder of the cleft in the roof of his mouth. Once these “big three” surgeries were behind him, Edmund could focus his energies on other aspects of his treatment, including a few more surgeries (for ear tubes); occupational, physical, and speech therapies; and, perhaps most important of all, simply living life as an exuberant, happy little boy.
Today, Edmund has speech therapy at the local school once a week. He also visits his friends on the Craniofacial team once a year so that they can monitor his growth and development. There will be many more medical procedures in Edmund’s future, including orthodontic treatment and nose, lip, palate, and oral surgeries. When he is old enough, Edmund looks forward to attending Camp About Face, a summer camp started in 1989 by the Craniofacial Program at Riley for children with craniofacial conditions.
Luke and Gina are thankful for the compassionate, integrated, and excellent care Edmund has received. They anticipate a long partnership with the Cleft and Craniofacial Anomalies team at Riley.