Sacramento infant's RSV diagnosis leads to discovery of rare heart defect
SACRAMENTO -- A life-saving diagnosis came for a baby after she was admitted to the hospital for RSV. It turns out, she had a heart defect and immediately went in for life-saving surgery at UC Davis.
It's not every day that RSV saves a baby's life. For Ellie Hipwell, 2, the virus that sent her to the hospital ended up exposing a life-threatening diagnosis.
Ellie's parents Mathew and Bethany say today their daughter is joyful, energetic and loves to play outside.
On the surface, it's hard to believe at just 2-months-old she was in the hospital fighting for her life.
"You'd never know. Until she takes her shirt off and you see the big scar down the middle," said Mathew.
A big scar from a big surgery.
Mathew and Bethany had no idea that the clock was ticking before Ellie caught RSV -- her heart was not getting enough oxygen.
"RSV made her lungs struggle and her heart struggle, which brought everything to the forefront," said Mathew.
In a span of just three days, Ellie was booked into the hospital, diagnosed with a rare heart defect called ALCAPA and went under the knife at UC Davis.
"This is a diagnosis that is really hard to screen for when babies are first born," said Ellie's pediatric cardiothoracic surgeon, Dr. Gary Raff. "With this congenital heart lesion instead of the heart muscle getting oxygenated blood from the aorta, the left ventricle gets deoxygenated blood from the pulmonary artery."
ALCAPA stands for 'anomalous left coronary artery from the pulmonary artery.' With this defect, the left coronary artery, which carries blood to the heart muscle, begins from the pulmonary artery instead of the aorta.
That means the left side of the heart is not getting enough oxygen.
Raff knew there was no time to waste, telling Mathew and Bethany she needed to get to the OR 'now.'
"I think eventually she would have had profound left ventricular failure and she might have died of it," said Raff.
Ellie had some symptoms that eventually lined up with her new diagnosis, including being lethargic and having poor weight gain.
"If a baby is fatiguing while eating and not growing. That is a huge red flag. Normal babies don't do that. If babies are not eating well, not growing well, that should prompt further investigation," said Dr. Raff, who encouraged parents to always push if a provider does not seem to be taking concerns seriously enough and exploring all options.
In Ellie's case, quick diagnosis of ALCAPA was key.
"The risk later is higher," said Raff. "That's why we would much rather operate early when the ventricle is still functioning quite well and is happy. When the ventricle is unhappy when we first operate on it, sometimes the kids need a longer period of time to recover, the morbidity is higher and the risk of dying is higher."
Mathew knew that Ellie was in good hands when she was admitted and diagnosed.
He's a nurse at UC Davis himself, running the children's surgery center.
His own friends helped save his daughter's life.
"This is my first experience being on the other end of it," said Mathew. "I come home everyday to see what we do."
As his daughter runs, screams and plays it is clear that nothing is slowing her down.
Though she will need to be monitored the rest of her life, Dr. Raff expects she will have no serious heart problems or health issues as her surgery was a great success.
For the Hipwell family, as life changing as the diagnosis is the perspective that came with it.
"You seem to appreciate stuff a little bit more, the time with your kids a little more than you would have when you know how precious it can be," he said.
For more information on UC Davis' diagnosis and treatment of Ellie, visit their website.
