Partners in Care, Partners in Hope

Nominated by Scott and Allison Kingsley

When our youngest son was diagnosed with Spinal Muscular Atrophy Type 1, our entire family was devastated. Even our daughter, Paige, no longer liked male doctors because they made Mommy cry upon hearing the news. (She really didn’t know the circumstances behind the tears.) After the diagnosis, we saw several doctors. The Genetics department told us we needed see a pulmonary doctor sooner than later.

Upon meeting the pulmonologist, we were pleasantly surprised. He listened to us intently and answered all our questions. He even walked down the hall to consult with a neuromuscular doctor we had seen the week before. We knew right away he was going to help us take good care of our son. His commitment to teamwork carried over to our son's two month hospital stay due to RSV. He always kept us informed on Brett’s condition whether good or bad and collaborated with us as well as the PICU attending physicians in his care. He also spoke with physicians outside Nationwide Children’s. He knew he was not an expert with SMA but spoke with a physician closer to the disease for possible treatments in his care.

Due to his consulting, he had a protocol faxed over and Brett was the youngest child at Nationwide Children’s to use the cough assist machine while on a ventilator. We consider the cough assist a blessing. It worked wonders for him then and it still does today! In addition, when we had to make the difficult decision of trach/g-tube or hospice, Brett’s pulmonary doctor was there for us just like he was there for so many other families. As always, it was our decision and he would stand behind whatever choice we made for Brett. He gave us the pros and cons but on another level, he put himself in our shoes as a parent. He took our difficult decision to heart. Simply put - he cared. We made the difficult decision of trach/g-tube in hope of a cure someday. He is behind our decision 100% and gives us unending strength by just believing in our ability to care for Brett.

On a family note, Brett’s stay at the hospital was hard on all of us. Paige, who was 4 1/2 at the time, really wondered what had happened to her little brother. After a month away from him, we arranged a visit with the Child Life Specialist. Little did we know but Brett’s pulmonary doctor planned to make a visit. Remember, Paige is not fond of male doctors anymore and Brett’s pulmonary doctor did not know this. So, I was definitely a little nervous when I saw him arrive. He squatted down to Paige’s level and spoke to Paige about Brett and also spoke about the presents she received from Brett. He knew all about Care Bears and the Barbie Elina dolls. I watched a transformation occurring in Paige with amazement. By the end of the visit, Paige liked boy doctors again. She thought Brett’s doctor was very nice and silly. We know still to this day he has no inkling how much he helped Paige during that visit but it is a day that has redefined her view of boy doctors for a lifetime! Not only was he treating Brett, but he treated our family as well.

During and after our son's stay in the hospital, we have spoken with many people connected to Nationwide Children’s. On several occasions, nurses and therapists have told us how wonderful our son’s pulmonary doctor was with all his families and how lucky we were to have him as our son’s doctor. They have all spoken very highly of him and all have had a very high regard for his knowledge in pulmonary care. In addition, over the past year we have made many friends with families of other special needs children. The families that have him as their pulmonary doctor also speak very highly of him. He is truly known by many and respected by all.

Yes, today we all still fight this awful disease as a team. Brett’s doctor also stays on top of new treatments by going to conferences, conferring with colleagues and collaborating with Brett’s pediatrician. All the while passing any new information gained onto his patients’ families and health care teams. It is that collaborative effort he exudes with families and health care teams that makes him an exemplary physician. The best thing is he does it without knowing it - it comes naturally. We truly feel if it was not for his ability to look outside the box on Brett’s care, we may not be about to celebrate his 3rd birthday. (Most SMA Type I children pass away before their second birthday.) We feel he is one of those rare doctors. Nationwide Children’s should be honored to have him on staff just as we are very honored and privileged to call him our son’s pulmonary doctor. So, on Brett’s behalf, we are nominating Dr. Richard Shell to be considered as the recipient of the 2008 Family Advisory Council's Award of Excellence in Family Centered Care.