CLEVELAND — A Northeast Ohio family is celebrating the miraculous recovery of their little girl who has defied the odds since birth.
Emma Detwiler is thriving today after a whirlwind journey of hospital visits and surgeries.
At three months old, a heart transplant ultimately saved her life.
Her family says it starts and ends with faith.
Faith got them through their most challenging and darkest moments.
Their little girl is a beaming light.
They're eternally grateful to the staff at Cleveland Clinic Children's for the care and support as well as the organ donor who would change their lives forever.
"We call her 'Extraordinary Emma', and it's just really how she carries out her day," Cara Detwiler, Emma's mother said.
Extraordinary is an understatement when you see almost 7-year-old Emma in action.
The Northeast Ohio native is full of life and never-ending love for those around her.
She's always having fun—likely with one of her beloved Barbies or Disney Princesses in arms reach.
"These are my girls. They are dollies," Emma said.
Emma has lived more in her young life than most will live in decades.
Her father Sean and mother Cara are in a constant state of awe around her.
"Emma is the one who inspires us more than anything with her joy, with her excitement," Sean Detwiler said.
Emma was born with a rare, debilitating heart defect where the right side of her heart did not develop properly.
Additional issues were found.
Her journey was challenging to say the least.
"She started her life not even being able to sit up or hold her head up," Cara Detwiler said.
Pulmonary Atresia would turn their worlds upside down, but it wouldn't stop Emma or the Detwilers from seizing the day.
At just three days old—she had her first heart operation.
However, doctors said a heart transplant would be necessary to survive.
Following a series of complications, she eventually got a new heart—one day before Valentine's Day six years ago.
"Fortunately, she is a very strong, was a very strong baby. And on February 13th of 2017, we were able to identify a heart and successfully get her through that surgery. It was a long road after that, as well. She needed additional time on the ventilator," Dr. Gerard Boyle, Cleveland Clinic Children's Director of Pediatric Heart Transplantation, said.
More bumps in the road followed.
"Every single organ took a hit in that first year of life and mainly in those first three months when she was in end-stage heart failure," Cara Detwiler said.
Her family never gave up hope.
After almost a full year in the hospital, she came home and relied on a feeding tube and ventilator.
"We naturally have persevered through a lot and have always had faith that Emma was meant for big things," Detwiler said.
Emma would reach one milestone after the next—rollerblading, dancing, and biking around the neighborhood.
She spoke her first words at age 3.
Her therapies and medications are now at a constant.
"These are all her liquid medications that she gets. Most of these are twice a day," Sean Detwiler said.
However, her parents say each day is a gift, and being around Emma makes it all worthwhile.
"Seeing that joy in her eyes gives us the strength every day," Detwiler said.
So, what's next for Emma and how's she doing?
Her father says her biggest issue is pulmonary hypertension.
She gets nebulizers twice a day.
Her care team will monitor her over the years.
However, her appointments are less frequent.
Overall, she's doing great and thriving.
Her parents say organ donation really saved her life, and everyone should consider becoming an organ donor.
