Brown began by noting the appropriateness that Dr Norman Saunders was Walker's pediatrician as it was in Saunders' honor that the Saunders Complex Care Initiative was begun at Sickkids. He then used the opportunity to share challenging experience, prefacing his remarks with the fact that there were only 8 known cases of Cardio-Facio-Cutaneous (CFC) Syndrome in 1996 and in the following years this number has risen to only around 100.
"Complex kids leave you guessing all the time and uncertainty is not something doctors like. Because it makes them feel at the bottom of the class. That explains the little sigh of resignation when we visit the hospital."
"These children are a new genre of human being. Children who are saved by brave and brilliant science... What brave medicine or brave society does is send the child home with the parents to go insane with this new human being.... We wondered why we were never told anything. It took us a long time to figure out they didn't know. And they didn't know to explain this."Brown contrasted the intimate knowledge of the pediatrician with the many other hospital staff Walker would meet over the years. He couldn't understand "why we kept repeating his history".
One day Brown brought Walker down for an MRI. They had to be at the hospital at 8am, meaning a very early wake up for the family. Brown then follows Walker's every move as he dashes around the playroom and clears any table he can find for 4 hours. At this point they are let in to another room where they finally meet the anesthesiologist who has noticed Walker has a heart murmur and does not wish to proceed with an anesthetic. Brown is incredulous that this would not be known to the doctor. He tells the doctor to please call dentistry as they sedated him two weeks prior for a dental procedure. In the end they return home. "In my humble opinion, a complex care program program worth its name would maintain a central record keeping facility." The story illustrates that in complex care cases, parents typically know more about the details of their child's care than staff meeting the child for the first time.
Brown alternated constructive criticism, often prefaced with "You know I love Sickkids, but...", with over sized metaphors that drew knowing laughs from the Sickkids audience. Brown's main points however should not be missed.
"This is a new human population. The only way to care for them is through an extended community. Maybe they need a dedicated waiting room. Maybe dedicated staff." He called for better communication and remembered an interesting study the family stumbled on. "I didn't hear about the new gene from Sickkids. I wonder why? Why didn't you send me an email saying have a look at this study."
He asked doctors to not lose sight of the family and their often modest hopes amid the medical chatter of confusing conditions. "If you create this extended community to care for this new type of mysterious and very rewarding child, you do not have to be a hero, you just have to be alert."
Brown considers that Walker at 12 has the mental age of a 2 year old and they communicate with little clicks of the tongue. Looking back on the experience, Brown called for parents and staff to premise the difficult work of care upon equality:
"I accept him as my equal. He is not the same. He taught me to communicate through something other than words and logic... It's like a blind date. You never know what will happen. You don't know if you want to go there, but you have to stay in the present."To Brown, Walker is "frail but not weak" and ultimately he epitomizes that "great spirit matters".
This was a parent presentation that I suspect will be remembered by everyone in the room and will impact on practise in small and large ways to the benefit of many families. It is to the hospital's credit that the tradition of Grand Rounds could centre on the challenging story of Walker Brown and the difficult journey of his family.
The above quotations were transcribed by hand and I have done my best to precisely record Ian's exact words. Any errors are mine alone.
Read more about CFC at CFC International: Caring, Facilitating, Connecting
Read more about Dr Norman Saunder's legacy of care for complex kids