Cary Sommer already had one child, so as far as her second pregnancy went, she believed she knew what to expect.
That all changed when she was in her doctor’s office for a diabetes test and began to experience the first symptoms of placental abruption, a serious medical condition that can cause preterm labor.
"It was incredibly disconcerting,” Cary says. “You’re just going about your day and now you’re in an ambulance to a hospital for an emergency C-section. 25 weeks is so early, so all I could think about is what’s this going to mean for our child?”
Cary’s son, Grady, was born on May 17. 2011. He barely weighed two pounds.
He had also endured periventricular leukomalacia (PVL), which is characterized by the death or damage of white matter in the brain. This is the section of the brain that transmits information between the nerves, spinal cord and separate cerebral hemispheres. The symptoms of PVL vary from child to child, but it often makes it much more likely that a child will have difficulty controlling certain motor movements. It also puts a child at a much greater risk of developing cerebral palsy (CP).
Grady and his family would spend the next three months in the hospital.
Coming Home and Next Steps
Gillette Children's is a regional, national and international leader in the diagnosis and treatment of cerebral palsy (CP). Gillette treats the highest volume of patients who have CP in the upper Midwest. Last year, the staff at Gillette treated children from all Minnesota counties, 41 U.S. states and 15 countries.
“When we finally got to take him home it was nice to just be parents for a little while,” Cary says. “Then, as he grew and we were coming up on milestones, you started to see him missing them. It was around this time that he was diagnosed with CP and we were introduced to Gillette.”
CP isn’t just one condition. It’s actually a spectrum of movement disorders that manifest in symptoms that vary from child to child. In children like Grady, who had PVL, the most common type of CP that results is called spastic diplegia. This is a form of CP characterized by tight, contracted muscles, especially in the legs.
“Grady was basically in therapy from his infancy on,” Cary says. “As he got older he was pretty mobile, but it was difficult for him to walk. The tightness of the muscles in his legs made it almost impossible to do certain things.”
What is SDR Surgery?
Around the time Grady was 6, the Sommer’s were told by their specialists at Gillette that a surgery called selective dorsal rhizotomy (SDR), would likely be the next step of his treatment process.
The muscle tightness that comes along with spastic diplegia is both friend and foe, simultaneously holding you up while also holding you back.
Rhizotomy surgery removes the faulty nerve roots in the spinal cord that are misfiring and causing this tightness. This effectively relieves the spasticity of the muscles, the only problem being that now you have to learn how to use muscles you’ve never really used before. The rehabilitation process requires carefully scheduled physical and occupational therapy that usually lasts between four to six weeks.
What makes the rehabilitation process post-SDR surgery at Gillette different than that of other facilities, is that all of it is done in one location. Our surgeons, pediatric rehabilitation medicine specialists and therapists work in close concert with one another to provide a comprehensive recovery experience that is conducive to improving long-term outcomes for our patients.
Grady, using virtual reality goggles during his recovery from SDR in 2018.
“No doubt, six weeks is a long time for a 6-year-old to be in the hospital,” Cary says. “But Grady did so much better in an inpatient setting that we expected. In between his intensive therapies, we watched movies and we played games. It was almost like camp. We actually started calling it 'Camp Gillette.' "
During his stay, Grady also made multiple friends (both people and animals alike).
“The animal-assisted therapy with the therapy dogs was definitely a highlight,” Cary says. “The other nice thing about being at Gillette is that there’s this beautiful blend of people, many of whom are going through similar things. I think it really had an impact on Grady to look around and realize that he wasn’t the only one who had CP. He made so many friends in the unit, some who lived locally and others from all over the world. We all came from different places, but there was this shared understanding between the kids and their families.”
Several years removed from his surgery, Cary says that the progress Grady has made has been phenomenal.
Prior to COVID and the changes it has brought to all of our lives, last year Grady visited the Boundary Waters for the first time and he and his family recently returned from a trip out West. They got to Mount Rushmore, Yellowstone and the Grand Tetons. School has started up again, but seeing that they always did that from home, it was refreshing to hear from a family who is weathering these challenging times as well as they are.
“I know that this has been hard for a lot of people, but I think we’re doing OK. Virtual appointments seemed a bit odd at first, but we got acclimated pretty quickly. When it comes to some things, honestly, I hope that we never go back to the way it was before. We live in Waconia and making the drive to the hospital or the nearest Gillette clinic was a bit of a hike for us. Virtual appointments won’t be possible for all of Grady’s care, but it is a nice option to have when we can,” Cary says. “As for Grady, I’m incredibly proud of him and can’t wait to see what his future holds."
"I think people who don’t have a child or know someone who has a disability occasionally overstate how important it is. While acknowledging that every situation is different, the way we see it is that God gave us this incredibly cool kid who’s had to deal with a few things. Grady’s so much more than his condition and once you get to know him, the fact that he has CP isn’t something you spend too much time thinking about. Are there challenges? Of course, but life is good even when stuff is hard. We do our best to approach every day with that mentality. In this current environment, I think that mindset has never been more important. It's not always easy to do and some days are better than others, but it's the trying that matters. We’re always going to be here for Grady. It’s also very reassuring to know that Gillette will be too. Because of the care Grady’s received at Gillette, his future will be whatever he decides it to be. That’s no small thing.”
Grady and his family in August, 2020.
The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) is an academy dedicated to the improvement of the care of individuals who have childhood-onset disabilities. AACPDM is a group comprised of pediatricians, neurologists, surgeons, therapists, nurses, special educators, engineers, and scientists from all over the world, all working towards a common goal. Together they strive daily to perform the highest quality research, offer education opportunities for themselves and others in their field, and work to elevate society and culture by recognizing the value and dignity of our fellow citizens who have disabilities.
AACPDM has an annual conference each year, where medical providers from all over the world come together to share their knowledge with one another, and collectively improve the level of care they can bring home to the patients and families they serve. This gathering has been held for nearly 75 years, and like many things right now, will be held virtually this year. The conference will take place September 23-26.
Gillette Children's was the first children's hospital in the United States specifically founded to treat children who have disabilities and has always been an active participant in AACPDM.
Gillette pediatric orthopedic surgeon and the medical director of the James R. Gage Center for Gait and Motion Analysis, Tom Novacheck, MD, is currently the Second Vice President and will become the First Vice President of the academy next year.
Throughout the week and leading up to World CP Day on October 6, we'll be sharing the CP stories and personal journeys of our Gillette families.
Be sure to follow along.
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