NORTH KINGSTOWN, R.I. — It is both a parents’ nightmare and dream come true that Jeanette and Michael Mollis have lived in the past year.
The nightmare started in late March 2019, just days after their son Michael, nicknamed Mikey, was born. She and husband Michael were on their living room couch watching a movie together. The phone rang.
It was their pediatrician. He had initial results from blood screenings given to all newborns in the state. The doctor was empathic, but also frank.
Mikey had a rare form of severe combined immunodeficiency syndrome, known as SCID. Jeanette Mollis knew the critical nature of that affliction. She’s a phlebotomist at Women’s and Infants Hospital in Providence and withdraws blood for that same screening.
“I pretty much just cried,” she recalled this week about hearing that devastating news. It became the first of various reports of devastating news they would hear in the coming months.
A year ago – Sept. 24 – Mikey had a life-saving bone marrow transplant, though the future was still uncertain. Today, his mother reports, he’s a healthy child running around, keeping her busy and has no apparent affects from the condition or transplant.
It’s a dream come true, she said.
Clouds with silver linings were hard to see in March, 2019, for the then 27-year-old mother and 32-year-old father. The home front was very different from what they wanted for welcoming their new child, who would join older brothers Jacob, 6, and C.J., 9 at the time.
“My husband and I had to go through a battery of tests. So did Mikey. The tests on us show that we both had the gene for causing SCID and any children we both had would have a one in four chance of getting it,” she said.
While it posed no health danger to either parent, children with this rare, inherited disease become very ill with diseases such as pneumonia, meningitis, and chickenpox and can die within the first year of their life.
With new advances, however, children with SCID can be successfully treated. In Mikey’s case, though, it was found that he has an especially rare form.
Hasbro Children’s pediatrician Anthony Hayward, who oversees Mikey’s care, told The Independent that his form of SCID occurs in fewer than one in a million babies.
“The body is not able to make fully functional white blood cells for the immune system, [it] has only been detectable at birth for a few years now, and Mikey is one of the first children in RI to be diagnosed” with it, he said.
All kinds of restrictions for holding, being around and even breathing on Mikey had to be followed strictly. Clothes had to be washed every time the parents and other two children came into the house. Sanitizing far more though than any required in COVID-19 was a moment-by-moment necessity.
Mother Jeanette Mollis said that the focus of debate for helping him centered on having a bone marrow transplant, but doctors at first were uncertain when to do it. Some wanted to do it immediately, while others thought some developmental time was needed for the newborn.
They eventually decided, she said, that six months old would be the right time. The next step was finding a donor and the parents turned to the “Be the Match” program in Rhode Island, part of the Rhode Island Blood Center.
RIBC recruits potential donors and guides those registrants through the donation process when they are found to match a patient in need of a bone marrow transplant.
In Mike’s case, the program found a match in Germany in a 33-year-old woman who was told about the infant’s and parents’ desperate situation, Mollis said.
After testing on the donor confirmed the match and the marrow was extracted, it was immediately flown to Boston Children’s Hospital where the transplant infusion took place Sept. 24, starting at 6 p.m. and ending at 9:24 p.m., said Mollis, noting the times with precision.
But he wasn’t out of the woods yet. He developed a liver complication.
“He had to fight for his life. He had trouble breathing and they had to put a drain in his belly to remove the fluid. It was really, really tough,” Mollis recalled.
For a total of three months, Mikey was in the hospital with his parents at his side, each of them with employers – his father a Cranston firefighter and Women and Infants Hospital where his mother worked – giving them time to be with the child.
Mollis paused while recalling the story. Her moment of silence spoke volumes.
“Actually,” she started in a voice determined to add one more twist to the story, “his immunologist said a few weeks ago he had a lot of babies die” from that liver malfunction.
But, it wasn’t Mikey’s time and it was his parents’ time for the dream come true.
“It’s amazing. It’s (now) like nothing happened. He’s a normal toddler running around doing normal things,” she said.
Hayward, also Mikey’s immunologist at Hasbro, said, “I’m happy to say that we at Hasbro Children’s Hospital were quick to spot Mikey’s diagnosis, figure out what needed to be done, and set Mikey up for care at Boston Children’s Hospital.”
“We have been very fortunate to work with such astute and careful parents, and give enormous credit to the transplant team at Boston Children’s for the care Mikey received there,” he said, adding, “The real hero of the story is the anonymous bone marrow donor whose donation cured Mikey.”
Ann Evans, spokeswoman for “Be the Match,” said, “We had such an amazing response to Mikey’s story last year. People wanted to help him and his story helped add nearly 800 people to the registry.”
She said that shortly after the story about him needing a bone marrow transplant was shared last year one person registered was almost immediately matched another patient in need.
“It’s amazing to watch Mikey grow! I’m so happy to have been a part of his journey to find a cure and to be cured,” she said, noting that joining requires only a five-minute digital registration at join.bethematch.org/RIBC and a cheek swab will be mailed home.
Mollis said restrictions prevent the family for a while from knowing the name of his donor and having contact information, but she and her husband recently sent a note of thanks through health-care providers.
When the restrictions are lifted, she said, she and her husband want to take the family to Germany to personally thank the donor.
Meanwhile, there’s not a day at work when she draws blood she doesn’t think of her situation and how this screening for SCID saved her child’s life.
“I share my story with parents. I don’t want to scare them, but this test is life-saving. Mikey is proof of it,” his mother said.