Health Care At Home Helps Aine Karate Chop a Poor Prognosis
When Aine’s mom, Nicole, found out that her daughter would be born with medical complexities (if she survived the birth in the first place), she was told not to expect a lot of brain function. Today, Aine says swings, plays trains, and attends school. Nicole was also told they shouldn’t expect her to acknowledge others or be able to sit up on her own – but the way Aine talks about her therapy horse and her karate awards, one thing is clear – she’s kicked down any poor prognoses doctors had at the beginning.
Early detection
At their 10 week ultrasound, Nicole and her husband Shawn were told that Aine had a cystic hygroma – a growth that can often cause heart defects. After additional ultrasounds and MRIs, they also found out she had Tetralogy of Fallot and DiGeorge syndrome.
“I was told Aine would not likely make it through the birth, and if she did, chances of respiratory failure and seizures were high due to the status of her lungs,” remembered Nicole.
Because kids with DiGeorge are known for having low calcium, which can cause seizures, when Aine was born they immediately tested her and found out she was deficient in calcium so they started supplementing her. After a three month hospital stay that included multiple open heart surgeries, a Nissen procedure, and a g-tube placement, Aine was ready to go home – open sternum protected by bandages and all – where she could grow and heal alongside her brother and dogs.
Care comes home
Since leaving the hospital, Aine and her family know home is the best place to be. And because she can receive care without needing to travel to a clinic, immunodeficiency concerns are minimized.
“Because a simple cold can land her in the hospital, it makes it difficult to ever let your guard down,” said Nicole. “Someone sneezes, and you’re calculating what kind of sneeze that was – allergy, cold, or something in their nose?”
Aine needs to be extremely cautious about attending pre-school and avoiding public spaces during the winter months due to a heightened risk of her catching a virus, so by having her PHS respiratory therapist, infusion nurse, and registered dietitian come to the home to provide care, she is able to stay healthy and out of the hospital.
Defying the odds
Since she came home, Aine has amazed her parents and caregivers alike.
“The improvement in her mobility is incredible,” mentioned PHS infusion nurse Lynn, who cares for Aine. “At first, she just sat in one spot. And now she’s almost walking. And they said there wasn’t much upstairs – and clearly that’s not true. She can say her ABCs, follow directions, deduce things, she does it all. She knows how to do her cares as well as I do.”
Alongside her brother, Aine has been doing karate and earned herself a trophy. She also does horseback riding with her therapy horse, Belle.
Making adaptations
Nicole and Shawn work to treat Aine no differently than they would their son, despite needing to provide cares and therapies throughout the day and take extra precautions. One way they’ve done this? Altering her clothes so her medical equipment fits more naturally under the fabric.
“When we first brought her home, she was wearing a pulse oximeter and oxygen 24/7,” remembers Nicole. “But in order to make her more ‘typical’, we got a lot of leggings we’d put the lines through. I alter a lot of her clothes so the g-tube line can come straight out and you aren’t lifting her shirt up. We need to respect her privacy too.”
By being able to minimize the need to make everything appear so medical, Nicole hopes that people will be more open to asking questions and inquiring about Aine, instead of being scared from a distance.
One tough cookie
In her first four years, Aine has been busy exceeding expectations and charming everyone she meets. She will keep doing karate, riding her horse, and attending school while making strides in her medical care. All signs point to big things ahead for this amazing girl, and we can’t wait to watch where she goes from here.
“I look at her, and it’s hard to believe that at birth what she was up against – someone who, from 10 weeks of pregnancy, I was told ‘don’t hold your breath.’ It’s incredible to see her progress – she’s one tough cookie,” said Nicole as she watched Aine climb a wall on their playset.
Originally published: October 16, 2015