Season of Hope: Family Hopefully Another Lab Type Will Be Daughter’s Best Medicine | Local news
Her first Christmas, when Clara should have been tucked in at home, she was lying on a hospital bed where she had spent too many moments of her life until then.
Staff members had brought the child a stuffed animal, a brown dog with floppy ears, as a gift. While this was a thoughtful gesture, it was hardly heartwarming for Janna Thompson, who had just kissed her husband, Travis, their 3-year-old daughter, Bella, and their 4-year-old son, Riley, goodbye on Christmas Eve. Now she was kneeling on the floor, crying and praying by Clara’s bedside, fearing that her baby’s first Christmas would also be her last.
The first six months of Clara’s life had been accompanied by many questions about why this child seemed so fragile, why she sometimes had epileptic seizures or suddenly stopped breathing. Six years later, all of these questions have not been answered. But Clara’s family believe the gift of a real dog could help her spend the rest of her vacation at home.
Many children wish a puppy for Christmas. But for Clara, a dog is part of a larger dream of having what others often take for granted: an ordinary childhood.
The goal of normalcy had been elusive since her arrival on May 31, 2015. As a newborn baby, Clara, whose tiny body had difficulty regulating temperature and glucose, was taken to the intensive care unit. neonatal. Eager to hold their daughter in their arms, the Thompson could only pray as they stepped into the incubator to touch her skin. Doctors wondered if the baby’s low muscle tone could be an indicator of Down syndrome, but within 24 hours Clara had shown such dramatic improvement that she was discharged from the hospital.
Although grateful to be home with her newborn baby, Janna sensed early on that something was wrong.
“I was not a first time mom and could tell there were different things about her,” she said. “(But) the symptoms were so elusive.”
Clara would stop breastfeeding abruptly, frozen in the moment, although fully awake. Sometimes the sounds of his breathing seemed to stop, followed by a gasping type noise. On two occasions, when Clara appeared to turn blue, Janna transported her daughter to the hospital, only to find that the symptoms were gone by the time they arrived.
“The third time, the attending physician in the children’s emergency department (emergency department) met me at the door,” Janna recalls. “He said, ‘Ms. Thompson, we need to look at what kind of mother continues to bring an asymptomatic child to the hospital.
The doctor asked if Janna had heard of Munchausen syndrome by proxy, a mental health problem in which a person, often a mother, puts on makeup or even causes symptoms of illness in her child in order to gain sympathy or support. ‘Warning. He warned that if she returned to the emergency room with a child showing no symptoms, he would recommend Janna to have a psychological exam.
Even Janna began to wonder if exhaustion could make her overreact, but Clara’s cyanosis (bluish color due to lack of oxygen in the blood) prompted a fourth emergency visit. This time, when the family arrived at the hospital, Clara’s heart stopped.
Doctors found that she was born with two holes in her heart and was showing signs of aspiration, but there was more. Further genetic testing, which the family requested overseas due to a two-year wait in North Carolina, indicated distal 18q deletion syndrome, a chromosomal abnormality associated with a myriad of health complications. Genetic disease is rare; The Chromosome 18 Registry and Research Society had recorded fewer than 450 cases when Clara was diagnosed in 2016.
“There isn’t a whole lot of data available,” Janna said. “Statistics vary widely, from children born and placed in palliative care to children who lead independent lives. “
Most of the information the family received was not good news. The Thompson’s were told that many children with the disease die from an epileptic event before reaching adolescence.
“People who don’t have this DNA are likely to never walk, never speak, have severe epilepsy, need a feeding tube, have life-threatening heart defects,” to be blind, to be deaf, to have a weakened immune system… and that was only the first page, “Janna wrote in her blog at projectshineproject.com.
Seeking expert advice, the Thompson eventually saw more than two dozen doctors in four states. Yet they refused to embrace many of the darker predictions. Instead, they chose to respond to each challenge by praying and believing that despite being diagnosed with “deletion,” Clara would not miss anything she needed to be healthy and whole.
The Thompson’s were no strangers to the miraculous. Janna had survived a horrific car crash and cancer, and the couple had welcomed three children in five years after being diagnosed with infertility. They watched in wonder as Clara, too, began to defy the statistics. Her myoclonic seizures stopped and a hole in her heart began to close on its own.
More victories came with time and effort as Janna led Clara to up to seven therapy appointments a week to help her grow strong enough to take her first steps unaided at the age of. 4 years. Her first words came after Clara tried to imitate her grandmother’s dog howls. do. (Clara later referred to a dog as’ Ahou, ‘Janna said.’ So technically ‘dog’ was her first word. “)
Now a kindergarten student at Chicod School, Clara recites daily a spiritual maxim that her parents taught her: “I am strong, tall, verbal, mobile, capable, complete… and I can do difficult things. Although she still struggles with strength and balance, today Clara can run and jump and she loves to dance.
But the episodes largely responsible for his first medical crises persist. Earlier this year, tests indicated that Clara’s condition could be fructose-1,6-bisphosphatase (FBP1) deficiency, which can cause lactic acid build-up and hypoglycemia. The condition can lead to acute attacks in which a patient stops breathing, suffers a seizure, or becomes comatose.
Clara has had eight such episodes this year, which has led to her being hospitalized half a dozen times. The scars on her arms are a reminder of the many times she needed intravenous medication, events that have become so common that Clara sometimes claims her stuffed dog needs an IV.
The Thompson are hoping that a medical alert dog could help spot these metabolic incidents before they are life threatening.
Born just before Thanksgiving, the British Labrador Clara plans to name “Bailey” won’t be joining the family for at least a year. By then, the puppy will be trained at Cedar Oak Kennels in Illinois, known to produce service dogs.
Owner and trainer Zach Kellerman said Clara’s dog would function much like a diabetic alert dog, which is trained to detect and smell the changes that signal an impending medical crisis. But Kellerman said the dog would be helpful to Clara in other ways as well.
“The dog will learn to stand for Clara if she loses her balance,” he said. “This connection that they have will also give Clara some emotional confidence. (She will have) her best friend by her side every day, who isn’t just a blanket or a teddy bear. It’s one thing. alive who breathes who cares about her.
Clara’s father Travis believes the dog will be of benefit to the whole family.
“I think it’s going to be a piece of mind knowing that he’s going to be in the room with her, and he can let us know if something’s up or if there’s something going on,” he said. declared. “Most importantly, it will help my wife not to have to be on call 24/7. Ever since Clara was born, she basically tries to sleep with one eye open.
In the past two months, supporters have raised more than $ 25,000 to fund the dog, which is not covered by insurance. Contributions have ranged from $ 3 and have gone from a child allowance to thousands of private donations, coming not only from eastern North Carolina, but the West Coast and Canada as well.
“It has been such an amazing community effort,” said Janna. “The important thing for me that touched me the most is seeing that there are parents who teach their children, ‘Yes, have compassion, but also react and do something about it.’
Family friend Maureen Swindell, who coordinated part of the fundraising effort through the non-profit community Cross Culture, was impressed but not surprised by the response.
“The story of the fight, the victories, everything that goes with it (gives) you just want to embrace them,” she said of the Thompson. “We just can’t imagine all the unknowns. Emergencies arise, worry, anguish, hope.
“It’s so much with Clara,” Swindell said. “This little girl has been through so much.”
At Christmas, Janna remembers how far her daughter has come and is grateful for the love and support the family has received.
“That first Christmas Eve after Clara was born… I sat on the cold hospital floor and thought, ‘I’m alone and worried about my child. I felt like the presence of God had just entered the room. I can not explain it ; I really felt like he put a blanket or something around us. He came with me. He wrapped himself in sadness with me and spoke to me from the inside out and said, “I know what it’s like to worry about your child on Christmas Eve. It was the realization that he was estranged from his son and that is why we have Christmas.
Six Christmases later, some questions persist. Tests and procedures did not yield all of the answers the Thompson were looking for.
“We’re not necessarily in a better place for six years,” Janna said, “other than thankful that we’ve had a good six years with her.”
Tax deductible donations can be made through The Cross Culture Community 70 ER Daniels Road, Wanchese, NC 27981 and designated for Clara Thompson. To learn more about the family history, visit projectshineproject.com.
She knows that a service dog won’t solve her daughter’s medical problems, but for the Thompson’s, her early arrival signals a season of hope.
“It’s not about finding answers. It’s not about finding the right diagnosis or the right test or whatever, ”Janna said. “It’s about how Clara can live every moment of her life. “