It was heartbreaking for Ashlee Wiseman to learn that her pregnant daughter Lennie had trisomy 18, a rare genetic disorder. Ashlee and her family faced an uncertain future after receiving the diagnosis, which is frequently referred to as “incompatible with life.”
She was informed by doctors that infants with trisomy 18 hardly ever make it past birth, much less attain developmental milestones like turning two. But in the end, Ashlee made a decision that would alter everything.
She relocated to Utah to receive specialist care at Primary Children’s Hospital, sold everything, and uprooted her family.
Although it wasn’t an easy choice, Ashlee was committed to giving Lennie the greatest possible start in life. Knowing that Utah was the only location where Lennie could get the kind of care she required, she relocated there with her family.
Lennie started receiving the medical care that finally enabled her to overcome the odds, thanks to the knowledge of Primary Children’s Hospital geneticist Dr. John Carey.
“Many children with trisomy 18 don’t survive past six months or a year. For Lennie to reach two years is remarkable and speaks to her spirit and resilience—and to the care she’s receiving at home.”
Few people, even those in the medical field, believed Lennie would ever reach her second birthday, which she is celebrating today. “She’s a true miracle to our family,” says Ashlee, who characterizes her daughter as “fearless, strong, and resilient.” Lennie’s survival and development are evidence to her mother’s love, selflessness, and unflinching resolve.
When doctors determined that Lennie had trisomy 18 at just 10 weeks pregnant, Ashlee was first given the heartbreaking news.
Babies born with the genetic disorder, which contains an extra copy of chromosome 18, frequently experience potentially fatal problems.
“The first doctor said they never move inside the womb. But I told them, ‘This one never stops kicking,'” Ashlee stated.
Ashlee was informed by the doctors that Lennie had little chance of surviving and would probably not live long after birth. Ashlee persevered in spite of the dire prognosis. Rather, she concentrated on how she would be able to give Lennie the finest care and assistance possible.
Ashlee made a big sacrifice when she decided to go to Utah. Ashlee made sure her family was placed in a location that would offer Lennie the best chance to succeed, leaving behind her home, employment, and support network.
Lennie was treated by a group of medical professionals at Primary Children’s Hospital who were experts in her disease, and it was their knowledge that eventually allowed her to live. Ashlee is adamant that Lennie’s life was saved by her choice to move.
The care of Lennie is complicated. She has a tracheostomy and depends on a feeding tube and ventilator to stay alive. Though she faces these difficulties, Ashlee is Lennie’s full-time caregiver and advocate in addition to being her mother.
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Ashlee takes charge of Lennie’s care on her own, learning how to take care of all of her daughter’s medical requirements, including feeding tube management and tracheostomy changes.
Ashlee has mastered the art of caring for her daughter despite the numerous complications of Lennie’s illness. She refers to her as “my little octopus” because of all the medical devices and attachments Lennie needs to keep healthy.
Despite Lennie’s everyday struggles, Ashlee finds happiness in the little things that other people might take for granted.
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She recognizes the value of every day and treasures the time she spends with Lennie. Every second Ashlee spends with Lennie is a gift.
Lennie’s tenacity and Ashlee’s unwavering love and commitment as a mother are both celebrated as she watches her baby, despite all odds, achieve her second birthday.
It is quite miraculous that Lennie survived, and Ashlee is incredibly thankful for the life she has with her daughter.
