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McKenna's Story | "A Whole New World"
MWPH opens up new possibilities for a patient who once needed machines 24/7
December 2024
Three-year-old McKenna Vantley sat on Santa Claus’ lap for the first time this month.
What may seem commonplace to other children was a major milestone for McKenna. For almost all of her young life, she has been tethered to something – ventilators, feeding tubes and countless monitors.
“I mean, we walked up to the room without a ventilator,” McKenna’s mother Mica Usher said almost in disbelief. “She wasn’t hooked up to anything. I would never think that this would happen this soon.”
Now McKenna is getting out of her small hospital crib and, for once, there are no strings attached.
“It’s a whole new world,” Mica said. “Before, McKenna was only going to appointments.”
For months, doctors at Johns Hopkins Hospital (JHH) and Mt. Washington Pediatric Hospital (MWPH) have been working to improve McKenna’s quality of life.
“It’s a major step forward in the best direction,” Mica said.
McKenna was born with Noonan syndrome, a rare genetic disorder that has severely weakened her heart and lungs. She also requires a feeding tube to get proper nutrition. These effects of Noonan syndrome have largely kept McKenna close to a bulky ventilator and attached to a finicky feeding system.
But this summer McKenna’s doctors proposed streamlining how she receives her food. Instead of a tube connected to her stomach and small intestine, doctors switched to a tube to just her stomach.
This might seem like a small change, but McKenna’s parents say it’s a game-changer. A simple g-tube (gastrostomy tube) can be adjusted or replaced at home after getting dislodged by an increasingly active toddler.
The g-tube only feeds McKenna at certain times, unlike the old system which was constantly connected. The change was first suggested by doctors at the University of Maryland Medical Center, where McKenna was born.
Now, Mica and McKenna’s father are seriously considering sending McKenna to school in the future, possibly the Maryland School for the Blind, something they said was unthinkable before.
While McKenna’s medical team addressed her feeding issues, Dr. Julia Rosenstock, attending physician at MWPH saw an opportunity.
“We were going to make her time in the hospital worthwhile,” Dr. Rosenstock said.
One positive aspect of Noonan syndrome is that children generally get stronger as they age. Dr. Rosenstock set her sights on McKenna’s ventilator.
“Dr. Rosenstock just hit the ground running,” Mica said.
The medical team slowly started scaling back what the ventilator does for McKenna. At first, the machine was doing most of the work of breathing but gradually it has moved into supporting McKenna as she takes her breaths.
Eventually, McKenna was taken off the ventilator for a short period. Recently, she went an hour and 30 minutes without the machine and Rosenstock hopes to increase that over time.
“I have no doubt that she’ll probably get rid of not just the vent, but the trach, probably in a year or two and that’s a huge difference in life,” Rosenstock said. “Right now, with the trach, she needs somebody awake and alert with her at all times.”
Rosenstock said that the effects of Noonan syndrome can sometimes come with irritability, but McKenna rarely shows that. On a recent day, McKenna was giggling while doing a back bend in her crib. She often “hugs” her medical team with her feet when they come to see her.
“She’s happy. She loves everyone who comes to see her,” Rosenstock said. “And she is only to going to be more engaged with things as she gets to have more experiences out in the world.”
With Christmas approaching, McKenna and her parents are looking forward to a holiday spent with McKenna’s two older brothers at their home in Baltimore County.
“Hopefully, we’ll have her home for Christmas,” Mica said. ♥
A VERY SPECIAL UPDATE: McKenna was able to go home with her family just before Christmas!