Any parent can identify with the immeasurable joy of bringing a child into the world, but what happens when things don’t go according to plan? What happens when that child arrives too soon?
“It was around 2 p.m. on a Friday afternoon when my water broke,” Teri Jackson recalls. “I was 26 weeks pregnant. When it happened, I knew right away what it could mean.”
Teri’s coworkers immediately helped her get to the hospital where her husband, Jay, would meet her.
When dealing with pre-term labor, the first 48 hours are crucial. Teri’s providers quickly administered medication to help slow her labor to allow as much time as possible for her baby to continue developing.
“It was a strange feeling. For most of your pregnancy you're just so excited to meet your child, and now you’re trying to delay that for as long as you can,” Teri says. “I was on strict bedrest. I just tried to set small goals, like if I can make it to tomorrow, then I can make it to the next day and the day after that.”
All in all, Teri was able to hold off giving birth for 10 days. On the 11th day, her son, Wes was born. He was transferred to the neonatal intensive care unit (NICU). There, Wes would remain for the next 78 days.
Coming Out of the Storm
“Wes was our first child, so in terms of his delivery I didn’t really know what was normal or what to expect,” Teri says. “After he was born was really when the scary part started for me, primarily because of the ups and downs and general level of uncertainty.”
Wes spent his first three days on a ventilator. It was determined that Wes had suffered a grade 1 (the least severe type) intraventricular hemorrhage (IVH), better known as bleeding in the brain, but his providers were hopeful it would not lead to further complications.
“Wes was getting better, but then we found out he had sepsis which was quite an ordeal,” Teri says. “While everything ultimately turned out alright, there was still a lot of uncertainty about what Wes’ future would be like. We just had to wait and see as he developed. That ambiguity is not what any parent would want.”
Complications and Cerebral Palsy
Once the Jacksons returned home, they were connected with the Birth to Three program run through St. Paul Public Schools. Wes started therapy nearly immediately.
“It was really kind of odd to think about your 3-month-old baby starting physical therapy,” Teri says. “As Wes grew, he experienced various motor delays. Rolling over, crawling, all of that came much later. The therapists would work with him on all of those things, but we were confident that cognitively, Wes was right where he should be.”
When Wes was 9 months old, he was diagnosed with cerebral palsy (CP) and was referred to Gillette Children’s Specialty. There, his family met Angela Sinner, MD, a pediatric rehabilitation medicine physician.
“I’ve basically known Wes for as long as he’s been coming to Gillette. It’s been a privilege for me to watch him grow up and to help him get stronger,” Sinner says. “He’s 7 now, so it’s been quite the journey for all of us. This level of continuity would be remarkable at many other hospitals, at Gillette, it’s just how we do things.”
Progress, One Day at a Time
When you talk to Wes, it quickly becomes clear that he’s not your ordinary 7-year-old; there’s a maturity about him that belies his age.
“Yes, that’s Wes,” Sinner says. “He’s always been an incredibly thoughtful and inquisitive kid. Many of the children we treat at Gillette grow up faster than they should. As rehabilitation specialists, it’s our goal to help them gain as much of their physical ability as possible. Every child should have a childhood and our kids have to work harder for that. It can mean countless hours of physical, occupational and speech therapy, botulinum toxin injections, and for many, multiple surgeries. This process requires a great deal of perseverance from our patients and their families. Luckily, perseverance is a quality Wes has in spades.”
As he grew, Wes threw himself into his therapies and other treatments. In 2018, Sinner and her team determined that Wes was a good candidate for selective dorsal rhizotomy (SDR) surgery.
“CP isn’t just one condition. It’s actually a spectrum of movement disorders that manifest in symptoms that vary from child to child,” Sinner says. “In children like Wes, who had a brain bleed when he was born, 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. SDR 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 recovery process for SDR surgery typically spans four to six weeks and is an intensive, carefully coordinated series of scheduled treatments and therapies. Seeing that most of the children who have the procedure do so around the time they’re 5-6 years old, the recovery process can be daunting at the outset.
“The thought of trying to keep our then 6-year-old entertained in the hospital was a lot to take in, but that’s really not what it was,” Teri says. “Following Wes’ surgery, the staff at Gillette put him to work. It was amazing to see the improvements he made during his stay, and that just continued after we returned home. Throughout the past year Wes has made incredible strides!”
On the Hunt For Who I’ve Not Yet Become
Wes continues to work hard on his therapy, recently started his adaptive basketball league, and is basically living his best life. He’s a good big brother to his little brother Miles, he has many friends at school (who fight over who gets to ride the elevator with him when they change floors), and there’s no telling what the future might hold for this delightful kid from St. Paul, Minnesota.
Wes was also gifted a set of weights from his cousins fairly recently.
It wasn’t a random a gift, he asked for them. He thinks he needs to start working out, as he dreams of being the quarterback for the Golden Gophers when he gets older.
“He definitely has a lot of aspirations,” Teri says. “I’m not sure what comes next, or what will be possible for Wes going forward. Just like anyone, he’s just trying to get a little bit better every day. With us and the staff at Gillette behind him, that’s exactly what he’ll do.”
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