Born at 26 weeks, 9-month-old Mairin Bowman has endured months of hospital care and testing.
Little Mairin Bowman smiles, giggles and plays during things which would make most children – and even adults – cry.
But, as her parents Edmund and Aubree Bowman of Ridgeway say, the 9-month-old doesn’t know any different.
The cheerful baby with the soul-piercing eyes was born on Nov. 30, at just 26 weeks. She was called a “micro preemie,” Mrs. Bowman said. The family has been on a frightening medical journey which has had them in hospitals in Virginia, North Carolina and Washington D.C., and at the whims and mercy of their insurance company.
The depth of the parents’ turmoil seems to be matched only by the height of the baby’s constant cheerfulness.
“She’s the happiest baby I’ve ever met in my life,” Mrs. Bowman said.
Through practically all the poking and prodding and sticks with needles and braces and exams, the baby has responded to everything with giggles and smiles. She has been a delight to all the medical professionals, who like to take her for walks (equipment in tow) down the hall or have her with them at the nurses’ station.
There was only one thing she objected to, Mr. Bowman said: “She had an issue with rhinovirus, and she had to be deep-suctioned, and that is the bane of her existence.” When the tube was inserted through her nostril to go deep down into her lungs, “she squeals” and protests.
Other than that, “she doesn’t even react at all” to whatever is done to her, he said.
The baby was in the neonatal intensive care unit (NICU) until Feb. 16. After the parents went through considerable education and training on how to take care of her, with the monitoring equipment and oxygen needed to keep her well, Mairin was sent home.
“We got out really early compared to what they were expecting,” Mrs. Bowman said.
However, it wasn’t long before her situation became complicated enough for her to have nursing care at home.
The real scare came on the Thursday before Independence Day. The machine that monitored the baby’s pulse and oxygen stopped working. Mrs. Bowman called the company for a replacement, but none would be delivered until after the long holiday weekend.
The mother explained the urgency of monitoring the baby – “How do we know if there’s a problem?” she asked the woman from the company.
“‘You’ll know if she turns blue,’” the woman replied.
“So I stayed up 24/7 the entire weekend” watching the baby – and she noticed that she was not breathing properly through the night.
They brought Mairin back to the pulmonologist, “and she was immediately like, ‘Whoa, that’s a new development. That’s really concerning,’” she recalled.
Thus began a long, arduous journey of a sleep study – in North Carolina, because no hospital in Virginia would do it on such a young baby – and tests.
The results were shocking: “Essentially, she stops breathing 2.92 times per minute because of central sleep apnea, not obstructive apnea,” Mrs. Bowman said. “Her brain forgets how to breathe every minute of the day.”
Her full name is Mairin Sloane, which is Irish for “beloved sea warrior,” Mrs. Bowman said. Ironically, one of the conditions she has been diagnosed with, Congenital Central Hypoventilation Syndrome, is sometimes called Ondine’s Curse, which is named for an immortal water nymph who causes men who are out to sea to not be able to breathe when they are asleep.
The parents and medical team tried everything else possible before resorting to a tracheotomy. This week, however, it was deemed necessary to create a safe airway, and now they are just waiting on insurance for where it would be done.
“She also has a mild left side weakness,” Mrs. Bowman said. Perhaps when the baby reaches 1 year old “it will be called cerebral palsy.”
This week, the Bowmans, including 2-year-old Sullivan, have been staying at the Ronald McDonald House in Winston-Salem while Mairin is at Baptist Hospital.
Mr. Bowman is a teacher at Magna Vista High School. At night he drives to Winston-Salem to be with his family. He leaves super early each morning to get back to work on time. He spends his weekends in the hospital and the Ronald McDonald House.
Mrs. Bowman said that Sullivan is not allowed to come into the baby’s hospital room. He sometimes has fun in the Ronald McDonald House’s “playrooms and really awesome playground,” but overall, “he’s not handling it well. He’s having panic attacks. He has stress that he’s never had before. He’s constantly” asking about “Sissy. He’s so worried about her, and the stress is just eating him alive.”
To give Sullivan back some of the consistency a toddler needs, Mrs. Bowman’s mother, Dr. Donna Meyer of Patrick County, is making arrangements to retire early to devote her time to the family. She is a guidance counselor and in charge of the SOLs for Carroll County, Mrs. Bowman said.
Other family also are helping. Monica Hatchett is a Bowman cousin; she and her daughter, Anna Hatchett, take care of the Bowmans’ two dogs, a Central Asian Shepherd and a Golden Retriever.
“Monica and Anna have jumped in as aunt and grandmother to Sullivan,” she said. “They take him to [Crosspoint] church on Sundays. … They are so wonderful we feel we don’t even deserve them.”
Meanwhile, the parents just keep plugging along, moving on autopilot.
“I feel like I’m just pushing it down so I’m not having a total breakdown, but it’s affecting my health,” Mrs. Bowman replied when asked how she is doing.
“There’s a possibility that she has a shortened life expectancy” due to the medical problems, she said. “There’s a possibility we may never know, because the genetics (testing) aren’t advanced enough, but we’re hoping that we do know so we can help plan and work out the best course of treatment for her.”
“She’s usually smiling, giggling, yelling” with glee, Mrs. Bowman said. One of the sadder parts of a tracheotomy is that it would damage her vocal cords which would make her not able to talk.
When she’s not being worked on, the baby spends her time being cuddled or lying in her hospital crib playing with toys that hang above her. She also watches National Geographic videos on whales, birds or other animals.
“The hospital is not scary for her because she’s super used to it,” Mr. Bowman said, “and everybody is so nice and kind to her. For her brother, it’s hit or miss. Part of it is hard because he wants to be home, wants to be in his normal routine and wants to be with Mom and Dad, but obviously he can’t be. … Mom and I are switching on and off” with turns with each child, “and his grandmother is thankfully watching him. He wants to see his sister, but he can’t. He has gotten as close as the door and has to leave. He’s a toddler and has little moments when he has meltdowns.”
The couple say they have been humbled and appreciative with how the community has stuck by them. People have held fundraisers for their various categories of expenses. A big thing they need is a vehicle large enough to carry the family, the medical equipment and that especially has room “to transport her back and forth to doctors when she is in a stable position” and that has “a place if I have to resuscitate my daughter, to lie her down flat,” Mr. Bowman said. “It’s weird” to have to take those factors into consideration while shopping for a vehicle.
And all on a teacher’s salary.
“None of the answers” to the medical testing “look like it will be good,” Mrs. Bowman said. “She’s cute and so happy and she is sweet. A part of me thinks she knows. She’s so calm and sweet and she makes all the time special, and she has to know to some extent, to understand that this is not normal.”
“‘She can’t say ‘I don’t feel good,’” Mr. Bowman said.
Yet, “I’m hopeful,” he said. “In this case all you really have is hope.”
To help the Bowman family, donations may be made to https://gofund.me/8dccad259 or in person at Checkered Pig, El Parral, and any other locations in town, or email [email protected] to be directed to a family member who will help.
Holly Kozelsky is the executive director of the Martinsville-Henry County Historical Society, which runs the MHC Heritage Museum. She is a former newspaper writer, and as they say, the ink runs in the blood, and the Enterprise indulges her passion. She can be reached at [email protected].
