Girl’s intense medical journey intersected with Mayor Walsh’s
The little girl was eager to enter the world.
Born six weeks premature, she grew into a happy, healthy, and active kid who loved song and dance, had an unshakable belief in fairies, and easily lost herself in her beloved books that fed a healthy imagination.
So when Kyla Smith-Howell approached her seventh birthday, her mother was alarmed at the changes she saw in her precocious child. Kyla was unusually sleepy. Her stomach was distended. Her eyes, which usually twinkled with a blend of mischief and glee, were dulled by a kind of yellow that almost looked fluorescent.
“That’s when I knew something was wrong,’’ said Chanel Smith, her mother. “I brought her to the emergency room at Children’s Hospital. And you know how they usually send you back to the waiting room? They didn’t send us back to the waiting room.’’
What followed was an intense medical journey of biopsies and blood tests, of ultrasounds and ominous-sounding medical procedures that culminated two weekends ago in a Boston Children’s Hospital operating room, where surgeons performed a successful liver transplant on the 12-year-old girl.
It saved Kyla’s life. But it will rob her of her fifth-grade graduation ceremony at the Mozart Elementary School in Roslindale on Friday morning — a celebration and rite of passage she had waited for all year.
But there’s a happy ending there, too. It comes courtesy of a man who knows about childhood disease — a man, who like Kyla, got to know Boston Children’s Hospital when he was a little kid. His name is Marty Walsh. And we’ll get back to him in a minute.
If the mayor of Boston has become something of a hero for Kyla Smith-Howell, he is in competition for that title with Dr. Scott Elisofon, the medical director of the liver transplant program at Children’s.
Elisofon, a native of Ridgefield, Conn., has been at Children’s Hospital for 15 years.
“Dr. Elisofon has been there since the beginning,’’ Chanel Smith said one recent day in her living room in Roxbury, where she is a single mother of five children.
It was Elisofon and his medical team at Children’s who diagnosed Kyla with autoimmune hepatitis in after that first visit back in 2013, a condition they initially attacked with medication and constant vigilance. That changed this past December when, after a routine ultrasound, they found something that was not routine at all: liver cancer.
“For her liver disease alone, she probably did not need a transplant,’’ Elisofon told me this week, after he visited with Kyla in her 10th-floor room at Children’s. “Because of the liver cancer, she needed one.’’
News of the imminent transplant electrified the Mozart School community, which filled Chanel Smith’s refrigerator with ready-to-eat meals and sold green silicon bracelets for $5 each and started a GoFundMe page, dual fund-raising efforts which have yielded $1,600 so far.
Mary Jane Guthrie, Kyla’s fifth-grade teacher and a single mom herself who started her first full-time teaching job at Mozart in the fall, said she and Kyla learned together this year how a close and caring school community can make a difference.
“I’m just in love with the children, and it was just a great class,’’ Guthrie said. “I loved every minute of it. It was a great opportunity to be in the children’s lives and make a difference. It was wonderful.’’
The teacher marveled at the resilience of her sick pupil, the kid who skipped small class celebrations to make up the work she missed because of her medical appointments.
“She works really hard,’’ Guthrie said of Kyla. “She’s one of the hardest workers. I noticed she was getting really tired. That made it difficult because nobody realized how sick she was.’’
But her teacher did. And so did her mother. The two women were together about two weeks ago, when Dr. Heung Bae Kim, director of the Boston Children’s Hospital Pediatric Transplant Center, began an eight-hour operation to save the little girl’s life.
Children’s does about 15 of these operations a year. All of them are extraordinarily complex.
“It’s an 11,’’ Kim said, when asked where he’d place the difficulty of Kyla’s operation on a 1-to-10 scale.
“None of them are easy,’’ Elisofon said. “You’re taking out an entire organ that has hundreds of different properties and you’re sewing at least three very small different blood vessels together. Blood needs to flow through them and out of them or otherwise it doesn’t work.’’
With the exception of the brain, the liver is the busiest of human organs. It’s 6 inches long and weighs about 3½ pounds, and it performs roughly 300 functions, from producing proteins that clot our blood to cleansing many toxins produced by our food.
And as the doctors went to work, Kyla’s mom and her teacher were in the waiting room, cementing a bond that went beyond anything that happens at the occasional parent-teacher conferences.
“Kyla’s so special to me, and Chanel doesn’t have a lot of support,’’ Guthrie told me this week. “And what I realized this year — what I learned this year is that you’re given this awesome responsibility to take a role in families’ lives. And I respect and appreciate having that role.
Chanel Smith will never forget the moment the doctors emerged with telltale smiles. “M.J. [Guthrie] and I were sitting there,’’ she said. “The doctor takes off his cap and says she did awesome. I think M.J. and I just cried and hugged each other. It was a miracle. It truly was a miracle.’’
And that gets us back to the mayor of Boston, who knows something about what it’s like to sleep in a bed on a medical ward at Boston Children’s Hospital.
Four years of chemotherapy forced him to miss much of the second and the third grade as he battled Burkitt’s lymphoma. Like Kyla, he would fall asleep in class and fall behind on his school work. Like Kyla, Children’s Hospital surgeons operated to attack his stubborn cancer.
“Kyla is a very brave young woman,’’ Walsh said on the phone Wednesday afternoon. “She is determined to beat this and then to go on and do great things in her life. And that’s exactly what she’ll do.’’
If Kyla’s transplant had been in December, she would have been back to school in six weeks.
But that didn’t happen. And because doctors are fearful of infection, she will not be at the Mozart School on Friday morning to collect her certificate, to say goodbye to her friends who will be scattered across other schools in September.
Kyla first met Walsh in April, when Guthrie arranged for a visit to City Hall. Kyla sat in the mayor’s chair and he presented her with a set of rosary beads that have never been far from her fingers ever since.
Walsh will be at Children’s Hospital on Thursday, personally delivering the certificate that Kyla’s classmates will receive on Friday.
There will be handshakes and hugs and photographs. Guthrie and several of Kyla’s former Mozart teachers will be there to mark a magnificent moment.
It will be a moment when a little girl, once afraid of the needles needed to draw her blood, breaks into a broad smile, the emblem of a healthy kid ready to take on the sixth grade and whatever lies ahead after her discharge from the place that saved her.
Thomas Farragher is a Globe columnist. He can be reached at email@example.com.