When my son was born with cerebral palsy, I thought we'd never play baseball together. After an innovative surgery, we made it happen.
Brett Seifried's son, Archer, was born with cerebral palsy and had a hard time walking.
Archer had surgery to reduce high muscle tone in his legs.
This is Seifried's story, as told to Kelly Burch.
This as-told-to essay is based on a conversation with Brett Seifried. It has been edited for length and clarity.
When my son was diagnosed with cerebral palsy at a year old, I thought about the activities I'd done that I hoped to one day share with him — sports, especially baseball, and military service. Those seemed totally unobtainable.
Of course, it wasn't just my hopes and dreams — cerebral palsy affected Archer daily. Once, the day care he went to sent a video of the children playing hopscotch, but Archer was sitting on the sidelines. I asked him about it and he explained he couldn't hop like his friends could. Hearing that hurt.
Rather than living life with Archer, I was hyperfocused on keeping him safe. He had high muscle tone in his legs, which made it hard for him to move around. Often, I carried him or pulled him in a stroller while other kids ran or rode scooters. Archer fell over a lot, which made even calm activities like cooking together dangerous.
Our doctor recommended we explore surgery
After his diagnosis, Archer was getting Botox shots and casts on his legs to help develop his mobility. That was something we would have to do until he was a teenager, getting new casts every three months. It was a lot.
Then our doctor mentioned a new surgery for kids like Archer at Seattle Children's Hospital. He connected me with Dr. Samuel Browd, a neurosurgeon performing selective dorsal rhizotomy, also known as SDR. The surgery cuts abnormal nerves in the lower spinal cord that cause spasticity, or high muscle tone, in the legs. Once they're cut, the brain and spinal cord can rewire those connections, leading to improved gait and mobility for kids like Archer.
Surgery sounded scary — but so did a decade of casts and Botox. Browd explained that the best time to do SDR is when kids are 4 or 5, exactly Archer's age.
Being at the hospital was valuable father-son time
After lots of evaluation, Archer was approved for the surgery. So he and I packed up and moved from our home in Portland, Oregon, to Seattle Children's Hospital. We were in the hospital for five weeks. That sounds rough, but it was a sweet time, just two guys hanging out together. When Archer asked to go fishing one day, the hospital organized an entire excursion for us. I was shocked that being in the hospital was truly fun.
But there was plenty of hard work, too. For the first three days after the surgery, Archer had to lay completely flat. After that he had physical therapy twice a day, plus a daily session of occupational therapy.
The change in Archer was immediate. Doctors had warned us he might go home in a wheelchair. Instead, Archer walked out of the hospital himself, dressed as Captain America. When we got home he started playing soccer with his sister right away.
Archer has come out of his shell
Browd said that research around SDR can point to physical outcomes, like an improved ability to walk. But patients often notice other benefits that are even more important. That's certainly been the case for our family.
Archer was always a quiet, shy kid. But now that he is more confident in his body, he's come out of his shell. He can play rough and tumble with his sister, who's a year older than him. We hike and bike together. He even played baseball last summer, something I never thought I'd see. Nine months after the surgery, Archer doesn't hold back on anything — he dives in head first.
As a parent, that's been transformational. I no longer have to worry about watching and protecting Archer every minute of the day. Now, I get to experience his life with him, not constantly making sure he won't get hurt.
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