On March 4, 2024, Emily experienced what can only be described as every parent’s worst nightmare.
She was holding her 2-year-old, Kenny, in her lap, attempting to rock the toddler to sleep. Suddenly, Kenny grabbed her chest, vomited, and went limp in her mother’s arms.
Panic-stricken, Emily immediately called 911. Kenny was rushed to the hospital closest to the family’s home in Kittanning before a decision was made to life-flight her to UPMC Children’s Hospital of Pittsburgh.
A Race Against Time
At UPMC Children’s, an ultrasound revealed a mass in Kenny’s chest. She was rushed to the Pediatric Intensive Care Unit (PICU).
“Within two minutes of being in the PICU, Kenny crashed,” Emily recalls. “The doctors started yelling for me to get out of the room.”
Cardiothoracic surgeon Luciana da Fonseca da Silva, MD, and a team of surgeons opened up Kenny’s small chest, revealing a two-centimeter tumor called a cardiac myxoma on her heart.
While noncancerous, the cardiac myxoma had embolized — meaning, it essentially exploded, sending pieces of tumor floating throughout Kenny’s bloodstream, blocking essential blood flow.
The lack of blood flow led to three successive, devastating strokes for little Kenny. The surgical team worked around the clock to attempt to stabilize her. They removed the tumor and fragments, and Kenny was placed on life support.
Fighting For Her Life
Those next few days were filled with moments of utter despair for Emily and her husband, Dave, as they stood vigil at their toddler’s bedside.
Nearly every facet of Kenny’s small body was affected by the tumor and strokes. Her heart wouldn’t beat without the help of a heart-lung bypass machine. She was unconscious and could not breathe, eat, see, hear, or talk. She was on dialysis as her kidneys had stopped functioning. And her legs and arms were completely paralyzed.
Emily and Dave were asked to consider end-of-life treatment options for their 2-year-old baby girl. Despite unimaginable grief and fear, Emily and Dave held out hope.
A Critical Evaluation
On March 7, three days after Kenny’s initial hospitalization, Dennis Simon, MD, from UPMC Children’s Department of Pediatric Critical Care Medicine, conducted a full, front-to-back MRI on Kenny.
While Emily and Dave were thrilled to learn that Kenny’s brainstem appeared unharmed, the MRI indicated significant damage to the part of the brain that controls sight and sound.
Dr. Simon believed that Kenny would regain consciousness, but she would almost certainly remain blind and potentially deaf.
“I just wanted my Kenny back,” Emily recalls. “I just wanted her back. Her personality. That’s what I wanted. The rest of it didn’t matter to us.”
Signs of Recovery
Over the next few weeks, Kenny began to show signs of recovery. First, she was removed from the heart-lung bypass machine and later from the ventilator.
She had nine additional surgeries — many to attempt to regain function in her limbs. “Early on her legs were almost black. We just assumed she would be a double amputee,” Emily shares. “Over time, thanks to Dr. Tim Ward and the orthopaedic team, her legs turned from black to grey to purple and eventually to pink! We couldn’t believe it.”
The biggest changes came when Kenny was moved to 7B, a different unit that offered fewer restrictions than the PICU.”
Slowly, Kenny started to respond to simple commands by nodding her head yes or shaking her head no. She then started moving her limbs. Eventually, she was taken off dialysis. Still, the physicians believed that Kenny would be legally blind.
Then one day Kenny had both eyes closed shut. She opened one eye and looked directly at her mom with a huge grin. When Emily asked Kenny if she was playing a trick and pretending to sleep, Kenny started giggling uncontrollably. Emily realized that Kenny could see!
“Dr. Simon explained to us that because Kenny is very young, her brain is still forming,” Emily states. “The plasticity of her brain likely allowed her to recover from injury in a way that wouldn’t be possible if she were a few years older. Kenny’s truly a miracle.”
Ready for Rehab
In late April, Kenny was transferred from 7B down the hall to the Children’s Hospital Rehabilitation Unit (CHRU). At the CHRU, Kenny worked with physical and occupational therapists, as well as specialized rehabilitation physicians and nurses. The specialists were particularly focused on helping Kenny see lights, experience brightness, and develop her leg strength.
Once again, Kenny defied expectations. After less than two months in the CHRU, she was able to crawl and had 100% of her hearing back. Kenny could see with almost full clarity, walk with assistance, and stand on her own two feet.
“Her personality came back, and double!” Emily laughs. “She’s so sassy. She’d tell the therapists, ‘I’m not a baby, I’m an angel.’ That child is going to move mountains!”
Home at Last
On June 27, 2024, after 17 weeks in the hospital, 10 surgeries, multiple procedures, and far too many close calls, 2-year-old Kenny was finally discharged home.
Physicians now believe the cardiac myxoma on Kenny’s heart was caused by an exceptionally rare genetic condition called Carney complex characterized by multiple benign tumors that usually affect the heart, skin, and endocrine system.
Kenny will require ongoing echocardiograms to monitor her heart as well as careful follow-up care and monitoring at UPMC Children’s. She will remain a patient of endocrinology, oncology, cardiology, and genetics for the foreseeable future. There are a lot of unknowns about Kenny’s long-term health, but for now, Emily and Dave are simply thankful to be back home with their child.
“For weeks, we were so uncertain if we would even have her,” Emily says, “I’d look at her empty car seat in my car and wonder if I’d ever get to take her home from the hospital. She’s made such a turnaround. There are no words to express our gratitude.”
Despite the nightmare their family lived through, Emily and Dave look back at their time at UPMC Children’s with appreciation for the many doctors, nurses, and specialists who cared for Kenny throughout their stay.
“Everyone at Children’s was incredible. The doctors and nurses did whatever they could to resolve every single problem. They’re amazing,” Emily shares. “Children’s gave us our baby back!”