Adina’s story is still being written, but one thing is certain: until she’s an adult, she will continue to need SickKids
Adina Samsonowitz, 6
North York, Ont.
Adina Samsonowitz was born on March 16, 2015, by emergency C-section. She was adorable, with a halo of dark hair and eyelashes that went on forever. But doctors quickly realized she had no reflexes and was struggling to breathe. Adina was rushed to the neonatal intensive care unit (NICU) while her mom, Gitty, lay immobilized and terrified behind a surgical sheet.
As bits of information trickled in, Gitty and her husband, Yaakov, learned that Adina had a severe form of hypotonia, meaning her muscles had little resistance – they were limp and largely ineffective. She also couldn’t swallow. Saliva pooled in her throat, and she required constant suctioning to keep the secretions out of her lungs. Because she couldn’t swallow, Adina couldn’t eat, and she would need a feeding tube – the first of many. The symptoms kept coming, but there was no diagnosis.
“The first few days were hell,” says Gitty. “I just cried.”
Three days later, Adina was transferred to the NICU at The Hospital for Sick Children (SickKids), which treats the sickest newborns with the most complex conditions. A procession of doctors from various clinical departments arrived daily to determine the scope of Adina’s symptoms, checking her from head to toe.
“They were throwing out different names of syndromes,” says Gitty. “It was surreal, because she looked so cute and perfect.”
Gitty still hadn’t been able to hold or feed her daughter, and was barely mobile after her C-section surgery. “I remember one day, I came into the NICU and there were four other families in the room and there wasn’t a rocking chair at Adina’s bed,” she says. (Each room in the SickKids NICU has four or five cribs and all the respective medical equipment, with just enough space for one chair at each bedside.)
“I remember just standing there and bawling over her little bassinet,” says Gitty. “I was exhausted and scared, and I couldn’t even sit down.”
After three weeks, Adina was moved to another inpatient unit and cared for by the Complex Care team, for patients who require many clinical services. “They are just amazing,” says Gitty. “They coordinate all the care.”
The search for a diagnosis continued. Blood work, MRIs, genetic testing and every available medical test were inconclusive. Along with medical visits, Adina received physical therapy to strengthen her muscles. A music therapist helped Gitty communicate and bond with Adina during those critical early months when she couldn’t easily be held.
Finally, four months after her birth, Adina was stable enough to go home. It was good news but leaving Adina’s trusted care team was daunting. “We had all this medical equipment,” says Gitty. “It was overwhelming.”
There were days when Gitty would have to suction Adina’s throat almost constantly. She was often uncomfortable and crying. The Complex Care nurses and social workers were—and remain—a rock of support. The family soon got to know the signs of Adina’s distress and when she was happy. Eventually, they got to know her.
Over the next few years, Adina would be in and out of SickKids with alarming regularity — anytime she got a cold or a fever, or when her feeding tube became blocked or the skin around it got infected. There were several surgeries to remove or tie off Adina’s salivary glands to lessen the secretions. None of it really helped. She had several kinds of feeding tubes and mechanisms. Eventually her care team settled on a GJ-tube, which delivers nutrition directly into her small intestine.
Adina tolerates the feeds relatively well, but the tube causes pain and problems that have landed her in the SickKids emergency department (ED) more times than her parents can count.
“The ED creates tremendous anxiety for me,” says Gitty. “You can be in there for eight, 10, 12 hours with a child who is very high needs. We’re suctioning, we’re watching her airway, we’re dealing with her tubes. I can’t leave to go to the bathroom.”
Today, six-year-old Adina is still without a specific diagnosis, which, in some ways, suits Gitty. “She’s writing her own story,” she says. There are no expectations or deadlines. There are limitations, but there’s also progress.
Adina can communicate verbally with her family. She can control her wheelchair. She can bear weight for short periods. She goes to school. There is joy and daily stress. And plenty of uncertainty.