To anyone, receiving a diagnosis with no treatment or cure would be a nightmare. For 9-year-old Presley Hewitt, that’s been her reality for the past six months. A heart transplant is her only hope.
A Grim Reality
It all started in July with a 15-minute stroke that left half of Hewitt’s body numb and unable to move. Hewitt’s mom, Meghan Andrews, rushed her to urgent care where she was transferred to Mary Bridge Children’s Hospital for more advanced testing.
After an echocardiogram (echo), magnetic resonance imaging (MRI), and electrocardiogram (EKG) Hewitt was diagnosed with Restrictive Cardiomyopathy, something she and her mom knew nothing about.
“But when they first said this is what it is, I didn’t really think much of it because I was kind of like well okay, so she’s got a condition so let’s, you know you put her on a heart condition [sic] and you move on,” Andrews said.
A week later, Hewitt’s care was permanently transferred to Seattle Children’s Cardiology Center, where they realized a grim reality. No cure or treatment exists, and a heart transplant is necessary to avoid complications or even death from her condition.
Restrictive Cardiomyopathy is when the heart ventricles become stiff and unable to adequately relax, Hewitt’s provider, Dr. Humera Ahmed explained.
“The secondary effect of this abnormality is a back-up of pressure into the filling chambers of the heart (the atria), which then dilate and can become quite enormous to accommodate the pressure. After a certain point, they can no longer stretch further, and the high pressures can begin to affect the lungs and the liver,” Ahmed said.
Getting on the List
Hewitt’s only hope is to receive a heart transplant before her condition deteriorates. Worsening symptoms will rob her of the semblance of the normal life she has now.
Hewitt was placed on the heart transplant list January 3. She is classified as Status 1B or “dependent on intravenous medications or a mechanical-assist device – in the hospital or at home.” This classification is the second highest priority on the heart transplant waiting list.
Now Hewitt begins the anxious task of waiting for a match. In the meantime, she’s taking blood thinners and a water pill twice a day to stay healthy. Staying healthy also means she has to avoid getting sick, something the COVID-19 pandemic hasn’t made easy.
“If you get sick when you’re on the transplant list, like once you’re on it, if you’re sick or you choose to go on a vacation, which we’re not willing to do, they pause your time and they skip over you because they can’t give a heart to a sick child. So I try to really keep her healthy and handwashing and things like that,” Andrews said.
Every day Hewitt goes to fourth grade, where she loves learning and looks forward to participating in P.E. class when she is better. When she comes home, it’s time to follow a cleaning and handwashing routine, and her ‘pills and shots’ routine. And somewhere in the middle of all of that are more doctor appointments and many more trips to Seattle Children’s Hospital.
Covering the Difference
All the hospital stays and trips quickly become costly, even with insurance. Andrews’ niece began a GoFundMe fundraiser to help offset the financial burden of what insurance doesn’t cover for Hewitt’s treatments. As of today, almost $45,000 has been raised.
Andrews expressed her gratitude for everyone who’s donated and spread Hewitt’s story and hopes to share the good news of her daughter being healthy soon. Although Hewitt doesn’t always show it, the shots, blood draws, hospital visits, and testing does take a toll on her.
“I have been nothing short of impressed by Presley from the moment I met her. Despite everything she has been through, she is a happy, positive and lovely young lady,” Dr. Ahmed said.
While it might be a aways ahead of her, Hewitt already knows what she wants to do with her new heart transplant. She dreams of growing up to be a hairstylist or a teacher and finally “getting to do P.E. at my school”.
To write this article, the Auburn Examiner interviewed Meghan Andrews, Presley Hewitt, and spoke with Dr. Humera Ahmed, MD, Transplant Center, Cardiology at Seattle Children’s Hospital. Hewitt’s GoFundMe page and Pennmed.org were also reviewed.
Last updated 1/14/2022, 11:15AM: The original publication of this article incorrectly stated Presley lived in Auburn. This has been corrected.
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