In the video, 6-month-old Jeremiah Nelson lifts his right arm off his bed and over his chest. A giant smile spreads across his face.
“Yay!” his father, Stacy Nelson, shouts off camera.
“You brought it up!” says Jeremiah’s mother, Danielle Nelson.
Jeremiah’s so happy he does it again. His mouth and eyes get wide with glee. It’s just three days after the fourth surgery of his short life, and Jeremiah has never been this proud of himself.
“I know! I know!” Danielle tells him. “That’s a big deal!”
Just three days earlier, before his surgery on Labor Day 2016, Jeremiah had no use of his limbs, or almost anything from the neck down.
“When I would go to pick him up with my hands in his armpits, he felt more like spaghetti, as opposed to having strength in arms,” Danielle said. “But he’s our little Superman. We’ve seen everything Jeremiah has gone through and how he bounces back and how strong of a spirit he has. He’s definitely our little Superman.”
One year, six surgeries
Jeremiah Nelson, born March 15, 2016, at Spectrum Health Butterworth Hospital, has myelomeningocele, the most serious form of spina bifida. This occurs when the baby’s spine and spinal cord don’t fuse together and close before birth.
A few hours after birth, Jeremiah went into his first surgery, during which doctors manually closed his spinal cord.
A month later, in April 2016, he had his second surgery — a shunt to relieve pressure in his head.
A shunt “is basically a set of plumbing that drains fluid from the head all the way into the abdomen,” said Casey Madura, MD, the pediatric neurosurgeon at Spectrum Health Helen DeVos Children’s Hospital who oversees Jeremiah’s case. About 80 percent of myelomeningocele patients develop with too much fluid in the head — a condition called hydrocephalus — which makes the shunt necessary.
While both of Jeremiah’s surgeries were successful, challenges remained.
In July 2016, at 4 months old, he began to lose function in his right arm and show weakness in his shoulder.
Doctors performed a third surgery, during which they drained a cyst — a fluid-filled sac in his back — that caused compression in his spine. They also removed part of his vertebrae, a procedure called a laminectomy, which enlarged the spinal canal and relieved pressure on the nerves.
He’s an amazing little guy, and you look at him and see his whole body smiling, not just his face. It’s contagious. It’s something that can be a testimony to others.
After that 13-hour operation, doctors placed Jeremiah in a body brace to limit his movement and promote healing. He briefly regained some strength over the next few months, but not completely.
By September, he had deteriorated and basically lost all use of his limbs.
That same month, Dr. Madura came aboard the team and performed a shunt revision. The aforementioned video — where Jeremiah excitedly moves his arm — had been filmed just a few days after that fourth procedure.
“That was a big thing for us,” Danielle said. “We weren’t sure how much function he would regain, so it was pretty awesome to see him move his arms again.”
“It was a very, very unusual way to present with shunt malfunction,” Dr. Madura said of Jeremiah’s near-paralysis. “I’ve never seen that. … But you could see when you compared his scans over time, the ventricles — fluid-filled spaces in his head — were getting bigger. And there’s a rule with children with what he has – spina bifida and myelomeningocele — there’s an unwritten rule that if you have a child with a shunt, and the child is having problems, you always have to consider starting with the shunt and trying to fix it because it’s almost always the problem.
“It’s a piece of wisdom passed down by people I trained with.”
Although Jeremiah regained strength in his limbs, his atrophy slowly returned over the coming months. Dr. Madura performed a second shunt revision — Jeremiah’s fifth surgery in nine months — in December. His strength again improved.
“All shunts eventually fail,” Dr. Madura said. “But the reason Jeremiah’s was failing more frequently is the same reason we did his last surgery, his sixth surgery.”
All babies are born with a fontanel, a soft spot between the bones of the skull. It allows a baby’s head to grow as the brain gets bigger.
When a baby has a shunt early in life, however, those bones often fuse prematurely, leaving the baby with too small a cranium.
In February, with the help of John Girotto, MD, who specializes in craniofacial plastic surgery at Helen DeVos Children’s Hospital, Jeremiah underwent a successful procedure called cranial vault remodeling, which reshaped his skull to allow for the growth of his brain.
He has shown consistent progress since that surgery.
“Part of what made him so unique, that remodeling, that cranial surgery, has had a profound effect on his brain and on his spinal chord,” Dr. Madura said. “Had we not done that, he probably would have needed repeated surgeries with that shunt. I think now he has a good chance to improve. And, in talking with his mom, it sounds like he’s already improved leaps and bounds in the past few months.”
The Nelson family lives three hours north of Grand Rapids, in the tiny town of Central Lake, population 950. It’s a town near the pinkie of Michigan’s geographical mitten, where cherry orchards seem to outnumber people and the lakes look impossibly blue.
During Jeremiah’s first six months, Danielle and Stacy were trekking about once per week — sometimes more — to Grand Rapids for appointments.
But things changed once they were accepted into the Peter and Joan Secchia CarePartners Program. The CarePartners Program is for medically complex pediatric patients whose families must travel from afar. Any family is eligible if they have three or more speciality providers, in addition to their primary care doctor.
“We help families travel distances so they can really optimize their time in Grand Rapids,” said Michelle Lancaster, RN, the CarePartners Program coordinator. “If you’re going to make that kind of trip, it’s your whole day and it doesn’t make sense for one appointment.”
Danielle said the program and working with Renee Dix, RN – the CarePartners nurse assigned to the family – removed a lot of stress and excess travel time from her family’s life.
“It was so nice to be able to talk to one person, to try to get the appointments on the same day, to try to save some trips, which is huge,” Danielle said. “And oftentimes they can do a better job of making that happen than me just as a random parent.”
Lancaster said the program allows families to reduce their time off work, reduce time off school, keeps them in their community and lets them have dinner at home in a more relaxed setting.
“It’s not only to coordinate appointments and run things by us, but some families have as many as 10 or 12 specialists,” she said. “And if you have a question, many times they’re unsure who to ask. Who is the person really responsible or able to answer this question? We help navigate those situations.”
From coordinating overnight stays to getting lunch or just providing quiet, private rooms during breaks between appointments, the program has been a godsend, Danielle said.
‘We know there’s a plan for him’
Despite the successful surgeries, Jeremiah still faces a number of obstacles.
Spina bifida patients can have significant bladder and kidney problems. Some can’t walk, while others walk with almost no limitations. Most fall somewhere in the middle, however, and they can walk with assisting devices, Dr. Madura said.
“There’s also a strong undercurrent of depression and social isolation because they so often feel ‘different’,” Dr. Madura said. “But often they can be cognitively normal. Spina bifida is predominantly a physical limitation. Sometimes there are associated cognitive problems, but not always. For children who are cognitively normal, their physical limitation is viewed by others as a sign they must not be normal and that has significant consequence, especially because it is often untrue.”
Danielle said Jeremiah has made a lot of improvements recently. Having him in the body brace — as well as the many surgeries — delayed his development, but he’s now standing up with the help of a stander, sitting up more frequently and slowly gaining strength.
He’s also starting to develop hobbies.
“He loves to flirt with the mommies and grandmas,” Danielle said. “He likes to make eye contact and start flirting.
“He’s also starting to really like looking at books and playing with some of his toys,” she said. “He’s got a ball, which he loves to play with, and some pegs. He uses them as therapy, but also as toys.”
In this battle, Jeremiah isn’t the only one who has ups and downs.
“It’s one of those things where there’s times of great discouragement,” said Stacy, his father. “It happens in times you don’t really expect it. Just the other day, I was at a handicapped kayak launch, because somebody had put some thought into allowing someone with physical disabilities to kayak.”
At the same time, he had to figure out how to safely get his son from the car to the boat.
“Having to learn how to appreciate and handle and deal with the ebb and flows, the highs and lows,” Stacy said. “Some days are really great, and some days are really bad.
“But he’s an amazing little guy, and you look at him and see his whole body smiling, not just his face. It’s contagious. It’s something that can be a testimony to others. He’s been through a lot, and yet he’s a real positive little guy.”
Stacy, a non-denominational pastor, sees parallels between the Biblical story of Jeremiah, a Hebrew prophet, and his son. And he finds comfort in that.
“God used Jeremiah to communicate his message to a nation that was really struggling, and because of that he went through struggles. So there’s definitely a parallel there,” Stacy said. “There’s a passage that talks about before he was even born. God says, ‘I knew you before you were born. I’ve got a plan for you.’
“So even though there are these physical disabilities, we know there’s a plan for him,” Stacy said. “He’s just an amazing kid.”
The CarePartners Program is a godsend for families of medically complex patients. Keep up the great work!
Our son was born with the same thing. He will be 44 tomorrow. Our surgery count is over 60. Of those about 30 are shunts and shunt revisions. Chris Halladay is an inspiration to all he comes in contact with. Yes there are some limitations. Yes there have been some scary moments. But God had taken us on this journey together and all of us that know Chris are who we are because of him. We have had surgeries all over the country as we moved with the military. Grand Rapids is our home now and we couldn’t be happier for the services available to all those with spina bifida. It will be hard work in the following years but know you are not alone.
I was also born with spina bifida and myelomeningocele. I walked up until I was almost 30 years old and now a wheelchair user. In August of 2000 when I was 29 years old I had my third tethered cord. After having two successful releases I was not concerned. At some point during the surgery my spinal cord was injured and I lost all lower extremity function. I cannot say I did not struggle with this huge change because it was difficult! I completed inpatient rehabilitation and returned to my career and husband. In 2005 we adopted our daughter from China. She is the love of our life and we are so blessed to have her. Spina bifida has made me the person I am today and I love where I am at in life. Hold tight to your little boy and know he is a precious gift!
Our daughter will be 2 in November and was born with spina bifida/myelomeningocele. We were fortunate enough to be able to have the prenatal surgery done at the Children’s Hospital of Philadelphia so have not had to experience the serious surgery’s that you have, but have had to spend some time in GR with a few infections, etc. The care there has been phenomenal and reading your story is just another encouragement to us and all of the family’s that are experiencing similar situations/medical issues.