Young Twins Navigating Pain Together
The idea of having a child who lives with chronic pain is unbearable to a parent. Mary Smith, 36, has two.
Her identical twin sons, Jacob and John Smith, have endured a lot in their 11 years. As a nurse with one child already, Mary anticipated that twins would mean a little extra time in doctors’ offices and twice the maternal worry. But she never anticipated that their lives would be plagued by one medical crisis after another, or how much time and energy she would have to devote to chasing down a diagnosis, let alone treatment, for both of them.
“Sometimes I feel like this is normal,” she says. “Because they needed an advocate and a case manager. But sometimes I miss just being able to be their mom.”
NOT OUT OF THE WOODS YET
Mary went into labor at 31 weeks; doctors struggled for three weeks to postpone delivery to give the babies a fighting chance. They spent three more weeks in the NICU. Mary and her older son James, then 4, were familiar faces to the staff there.
A few weeks after the twins were discharged, Mary made the difficult decision to pack up her kids and move from Washington state to Ohio to be closer to her family.
A week after the move, John got sick.
“My belongings were still in a truck somewhere in the Midwest, I was living in my mom’s living room, basically homeless, and now someone is telling me my baby has meningitis,” Mary recalls. “There were some pretty dark days in that ICU.”
Baby John spent a month in the hospital. The inflammation in his brain went away, but imaging scans indicated permanent brain damage. Fortunately, as John grew over the years, he never exhibited any issues more severe than a slight hand tremor. “His neurologist would say that, judging from the scans, this kid should be having trouble walking and talking and maybe having seizures,” Mary says. But from the way John acted, skipping into the office and telling the staff he loved them, it was as though the scans didn’t belong to him.
Both boys presented with strange symptoms over the years. Jacob’s difficulty swallowing and eating was dismissed by doctors as typical infant reflux. Both boys complained of leg pain and fatigue as toddlers, and by the time they were 4, John was having migraine attacks and Jacob was experiencing chest pain.
“It’s scary when a little kid tells you their chest hurts,” Mary says. But any time she brought the symptoms up to a doctor, her concerns were brushed away and the problems chalked up to the twins having been born prematurely. “I knew it wasn’t in my head, but all these tests came back negative,” she recalls. “I started to doubt myself. It made me feel crazy.”
It wasn’t until Mary had to carry 6-year-old John into an appointment that his doctor finally began to suspect something more was going on. Both twins were eventually diagnosed with a rare genetic condition called hypermobile Ehlers-Danlos syndrome (hEDS), which affects connective tissue.
The relief of a diagnosis was only momentary, because both boys continued to have other unresolved health problems.
DIAGNOSIS PART II
Jacob’s eating issues affected his growth so much that by third grade, people didn’t recognize him and his brother as identical twins because of the dramatic difference in their heights and weights.
Mary took him to specialist after specialist, but, she says, “it got to the point where he would just cry when he got to the doctor’s office because he didn’t want to go through any more tests.” Just as they had been with hEDS, his symptoms were dismissed, this time as anxiety, before he was finally diagnosed with gastrointestinal issues that included ineffective esophageal motility and gastroparesis. In effect, Jacob’s esophagus wasn’t squeezing food down his throat correctly, and his stomach wasn’t emptying in the proper fashion.
“He was sent for anxiety counseling before he ever received those two diagnoses,” Mary says. “When you’re dealing with chronic issues, anxiety tends to come into it, but his anxiety was from not knowing when his next pain flare would be and not knowing what was causing it or how to manage it.”
The constant doctor visits continued to be hard on Jacob. “I like my doctors now, but sometimes I’m scared I’ll have to have another test or procedure, and I hate enemas or any tests that involve something like that,” he says.
John, meanwhile, was having chronic migraine attacks, complete with nausea, light sensitivity, fatigue, and brain fog. “Once,” Mary recalls, “he forgot the word ‘beef’ when he was trying to order a taco.” The longest he’s ever gone without an attack is two weeks.
Mary recalls, “When he was in second grade, he said that if this was how his life would be, he would rather not live it.”
It’s hard to imagine a mother hearing more heartbreaking words from her child than that. “I felt helpless because I couldn’t take it away from him,” Mary recalls. It was John’s neurologist who ultimately gave him hope when she explained that boys sometimes outgrow migraine. “After that,” Mary says, “even on his bad days it never got that bad again.”
HOPE TIMES TWO
A recent procedure seemed to help initially and allowed Jacob to have one of the first pain-free meals of his life. Unfortunately, the effects didn’t last long before the pain crept back, so they are still searching for solutions.
Every time they tackle one health issue, another seems to crop up, like an endless hydra. But Mary never gives up on the herculean task of advocating for her sons and their health.
Like their mom, the boys have risen to the challenge, taking an active role in their treatment.
“Sometimes I get tired of having to talk to different doctors, but I also like that they now include me and give me a choice with my medications,” John says.
The now fifth-graders are Cub Scouts and play on their school’s basketball team. They enjoyed the U.S. Pain Foundation’s Pediatric Pain Warrior retreat in 2018 and the virtual retreat in December 2021. There, they learned for the first time that they weren’t alone or the only kids who had to deal with the conditions they had.
On tough days, it helps to have a twin who understands. “I want to be able to play with my twin, and if I’m not well and he is, that makes it more difficult,” John says. “In some ways it is also easier, though, because I always have someone that understands me, my twin.”
They’ve also learned to advocate for themselves, to teachers or other kids at school who don’t understand their largely invisible disabilities, or to physicians who dismiss symptoms. Jacob says he would like more people to know that, “I don’t fake it to get out of schoolwork. I do the best I can, but I hurt every day.” And John adds, “I have chronic illnesses. This isn’t just a cold that will be gone in a few days. I’ve been dealing with this for years.”
Their mom continues to chase down specialists, drive to appointments, and figure out copays, but, Mary says, “It doesn’t do any good to wish that life was different, because these are things you can’t change. I could focus on the fact that they are in pain pretty much every day, or that these are chronic conditions there are no cure for. But I focus on the positives.”
To Mary, her family is the biggest positive of all. “My sons have very big hearts and are very caring,” she says. “I can’t imagine a world without them in it.”