Jacob Ray Hall is a mischievous pixie with twinkling blue eyes and — appropriately — a wispy tangle of strawberry blond curls.
On a recent sunny morning, the 1-year-old was the star attraction at a small family gathering outside the East Corinth home of his great-grandparents Beverly and Kenneth Tate, retired owners of the regionally renowned Tate’s Strawberry Farm.
But life has not been any bowl of berries for Jacob or for his young parents, Ray and Jessica Tate Hall, who are both just 19 years old.
Born with a life-threatening malformation of the membrane that separates his chest cavity from his abdomen, Jacob has endured multiple surgeries to correct the placement and function of his lungs, stomach and other vital organs.
More recently, he has developed an as-yet-undiagnosed blood disorder that has brought about frequent trips to the emergency room, hospital admissions, blood transfusions and more anxiety than many families endure in a lifetime.
Still, with Mother’s Day approaching, Jessica Hall seemed to be taking things in stride. She smiled and chatted easily during the recent visit with her grandparents, watching with happiness on her face as Jacob — not quite yet walking on his own — clambered in and around a pint-sized plastic police car on the sunny patio.
The little boy paused from time to time, scanning the rapt faces of the adults, making sure he was still the center of everyone’s attention.
He was.
Rough start for new family
Jacob has been basking in the warmth of his family’s spotlight for all of his short life. He was born at Eastern Maine Medical Center on May 2, 2008, with the life-threatening abnormality of his internal organs. Only a few hours old, he was whisked by ambulance to Massachusetts General Hospital in Boston. Two days later, he underwent major surgery to repair the diaphragmatic hernia that had allowed some of his abdominal organs to move up into his chest cavity.
“We couldn’t even hold him in our arms for six days,” Jessica said as a visitor paged through a photo album that chronicled those difficult days.
The photo images show the baby on a ventilator, with a long curving incision arcing across his ribcage and over his belly. Intravenous tubes, heart monitors and other medical paraphernalia form a scary cityscape around his steel-sided crib.
Not long after the first surgery, a second operation was needed to reposition the infant’s stomach so he wouldn’t keep vomiting the breast milk that Jessica was pumping for him. All told, Jacob was at Massachusetts General Hospital for 17 days, with a small army of family and friends from Maine in attendance the whole time.
Settling in at home
Once Jacob and his parents came home to Corinth, it seemed as though life might return to normal — as normal as life can be with a sickly new baby in the family. With the support of a deep-rooted and far-flung family network, Jessica managed to keep pace with her classmates at Central High School in Corinth and graduated in June. She held Jacob in her arms as she marched. Ray found full-time work and made plans to earn his general equivalency diploma.
Spring turned into summer. The Tates’ strawberry plants blossomed and fruited. On the Skowhegan dairy farm owned by Ray’s family, new calves romped.
Living with his parents in an apartment in Jessica’s father’s house on the strawberry farm, Jacob was meeting his developmental milestones — holding up his head, kicking his skinny legs, developing a private baby-speak vocabulary and flirting with those devastating blue eyes. He gained weight and got strong. He charmed his doting grandparents and great-grandparents, all the aunts, uncles and cousins, the friends and neighbors who came to baby-sit and help out in other ways. Regular medical appointments in Bangor indicated that Jacob’s health was improving despite his difficult start.
But on Thursday, July 31, Jessica recalled, the baby was fussy, cranky and just not right.
“He wasn’t being himself,” she said simply. Trusting to her mother’s intuition, she and Ray started for the emergency department at EMMC with Jacob secured in his car seat in the back. On the way to Bangor, Jacob vomited blood.
“I just lost it,” Jessica said. “I started bawling.”
At the ER, Jacob’s hemoglobin, the measure of the oxygen-carrying capacity of his blood, was a critically low 3.8 grams per deciliter of blood. Normal for his age would be 11 to 13g/dl. Jacob was admitted to the pediatric floor and given six units of blood over the weekend.
From then on, frequent transfusions were the norm, Ray said.
“We were there every weekend,” he said. “We were there so much we knew all the nurses by name.”
The frequency of the transfusions has slowed now, but Jessica says there are hard decisions ahead.
“He doesn’t have a diagnosis yet,” she said. All the doctors know is that Jacob’s spleen is apparently mistaking his healthy red blood cells for old, worn-out red blood cells and destroying them. When that happens, his skin and eyes take on a yellowish hue, and the young parents — who married last December — know it’s time to plan another trip to Bangor.
Jacob now has an intravenous line surgically placed in his neck so doctors and nurses don’t have to subject him to traumatic needle sticks. A recent trip to Children’s Hospital in Boston determined that he may be suffering from either a disorder of his red blood cells or a problem with his spleen. Maybe both. It is unclear whether, or how, the current problem is related to the diaphragmatic hernia he was born with.
“He could be transfusion-dependent the rest of his life, or he could have to have his spleen taken out,” Jessica said. Either course has profound lifestyle implications for the little boy, including a chronically weakened immune system.
One day at a time
For now, Ray and Jessica said, they’ll continue taking Jacob back and forth to Bangor for transfusions, blood tests and other health care needs. This past Tuesday night, Jacob was hospitalized for another blood transfusion.
A longtime connection to the hospitals in Boston is a near-certainty, Jessica said. But they’ll have to wait at least a month from the most recent transfusion to get accurate results to the blood tests that will help diagnose his underlying problem, she said.
Although Jacob’s medical care is covered by the public MaineCare program, Jessica and Ray said the cost of travelling, even just to Bangor, is burdensome. Trips to Boston are, of course, much worse. Food, gas, tolls, hotel rooms — “it really adds up,” Ray said.
Ray has earned his GED but is unemployed. Jessica works part-time waiting tables at a local restaurant. Their families have been extraordinarily generous with time, money and love, they said, and a recent fundraising supper brought supportive gifts from hundreds of community well-wishers. The event brought in almost $4,500.
“We’d like to send out a sincere thank-you to all the people in the community that have supported us,” Ray said.
Jessica said she takes Jacob to area high schools and talks with young students about the hard realities of an unintended pregnancy. She and Ray didn’t plan to start a family so soon, she said, but they never questioned the rightness of staying together and raising their baby themselves.
“We’ve been together for four years now,” she said, smiling as Jacob roughhoused giddily with her Grampy Tate. “I think I’m a good mom. I know I’m a good mom.”
On Mother’s Day this year, Jessica and Ray plan to spend the morning and early afternoon taking Jacob to visit with her mother, Tammy Tate in LaGrange, and his mother, Stacey Hall in Bradford.
Then, in the afternoon, Jessica will go to work at the Countryside Restaurant in Corinth. Mother’s Day dinner is traditionally an opportunity to earn good tips, she noted optimistically.
“I’ll be working from 3 to closing,” she said. “Maybe I’ll make a lot of money.”
Gifts in support of the Hall family may be sent to any branch of Maine Savings Bank. Checks should be made out to The Jacob Hall Fund.
