When she was 14 months old, my daughter, Erinne, was diagnosed with spinal muscular atrophy (SMA).
Essentially, SMA is the pediatric version of ALS (Lou Gehrig’s disease).
We were told that she wouldn’t live past 8 years old. She’s clearly blown right past that prediction – she is 18 now, and is an incredibly positive, optimistic young woman.
I’d love to say she hasn’t slown down a bit, but the truth is – she has. Erinne used to walk with the assistance of a walker, but the disease has progressed and limited her physical abilities. She now she uses a power wheelchair, needs assistance to feed herself and breathes with the help of a ventilator while she’s sleeping.
One of the challenges with this disease is managing Erinne’s pain. She has four rods in her spine and a dislocated tailbone that causes severe pain. We tried many avenues to manage the pain without much success until our care team suggested a referral to palliative care services.
End-of-life, or best-of-life?
When we were first referred to palliative care, I was reluctant because I thought it was all about end-of-life care. I was surprised (and thrilled!) to learn that their services are much broader than that.
Palliative care focuses on the physical, psychological, social and spiritual needs of patients with chronic or life-threatening illnesses. They don’t replace the physicians caring for your specific medical conditions – they work with them and identify ways to help children and their families have the best quality of life possible, despite the challenges of their condition.
We’ve been working with the palliative care team for five years and Erinne says she feels the closest to that care team out of all the providers she has.
When we meet with Dr. Pituch and our nurse Maureen, they focus on Erinne. Many doctors direct conversations to the parents, but this team talks directly to Erinne. They sit down knee to knee with her and look her in the eye. They ask how she’s feeling physically and emotionally. They really care about her and it shows. After her best friend, who had the same disease, recently died, her palliative care team reached out to see how she was coping. They keep in touch with her and always ask how she’s dealing with that loss.
The palliative care team’s approach incorporates the whole person. The team worked hard to find a good balance of medications to manage her pain and allow her to do the activities she wants to do.
And while palliative care has not been about end-of-life care for us, it is comforting to know that if we ever need end-of-life care or need to discuss a transfer to hospice care, we already have a relationship in place with the palliative team. They are not strangers to us – they are part of our team. That means so much to us and is a big comfort.
Living life to the fullest
Erinne’s pain levels are manageable now and she’s able to play wheelchair hockey, a sport she loves! Her two main passions are hockey and animals. She loves the Detroit Red Wings and has met many of the players over the years. Almost every weekend, she plays defense for her wheelchair hockey team, the Cobras.
She also loves animals. She has a service dog, and we also have a pit bull, four cats, a bird and frequently foster kittens. Erinne hopes to go to veterinarian school one day. She’s starting college in January at Schoolcraft College and hopes to transfer to U-M one day and then attend vet school at Michigan State.
There is a promising drug on the horizon that we hope will be able to help Erinne. In the meantime, we take things day by day. She has big dreams and continues to make a difference in the lives of others. Her work here on Earth is not done!
Take the next steps:
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.