When Jessica Doney of Virginia Beach heard her favorite DJs from 94.9 The Point interviewing families during the 2007 Radiothon to benefit CHKD, she knew she had to be a part of it.
The story she had to tell spanned 13 years, from her own cancer diagnosis at CHKD in 1993 to her son’s stay in the hospital’s neonatal intensive care unit in 2006.
“I heard these incredible stories about CHKD on the radio and I was compelled to tell mine,” Jessica said. “I felt so grateful for all that has been done for me and my family that I just had to share it.”
Jessica’s story began when she was 9 years old. An avid gymnast, she had started to lose her balance and suffered from increasingly debilitating headaches.
“My headaches were unbearable,” she said. “I’d wake up vomiting in the middle of the night. It was miserable.”
Her mother took her to a doctor who suggested that she was suffering from stress headaches. Convinced that her 9-year-old didn’t have that much stress in her life, Jessica’s mother sought a second opinion and was referred to CHKD. Her mother’s worst fear was realized when tests at CHKD revealed an astrocytoma, a large tumor lodged in Jessica’s brainstem.
Her family was in a daze until CHKD neurosurgeon Don Penix performed a 13-hour surgery and successfully removed the tumor. That was the beginning of her recovery that lasted more than a year. During that time, Jessica had to learn to walk, talk and eat again. Through extensive physical and occupational therapy, she did those things and even learned how to write with her left hand.
Jessica has been cancer-free since then with little more than a 9-inch scar on the back of her head and occasional hand tremors to remind her of that time in her life. She never imagined that the hospital would play yet another important role in her life.
Fast-forward to 2006 when Jessica and fiancé Xavier Idrovo awaited the birth of their son.
Ethan was born five weeks early, small, but able to stay at the Virginia Beach hospital where he was born to feed and grow. But after two weeks, Ethan’s condition deteriorated. His belly became distended and X-rays revealed abnormalities and tiny gas bubbles on his intestinal walls – symptoms of NEC (necrotizing enterocolitis). NEC is a life-threatening illness that destroys the intestines of newborns.
His physicians recognized the seriousness of Ethan’s illness and called for CHKD’s mobile intensive care unit.
At CHKD, neonatal specialists worked to stabilize Ethan, still only 3 pounds, and halt the damaging effects of NEC. The disease can quickly lead to scarring and holes in the intestine, problems with food absorption if parts of the intestine have to be removed, and severe infection.
CHKD neonatalogist Jamil Khan said that the cause of NEC is a mystery. “NEC occurs in one out of 10 pre-term babies,” he said. “It’s the most common surgical emergency for infants, but thankfully, we were able to treat Ethan without surgery.”
Still, it was a difficult time for Jessica and Xavier.
“Standing there looking down at my tiny baby in his crib in the NICU, I realized that I must be feeling the same way my mother felt when I was in the hospital,” Jessica said. “I was scared and worried and tired, but at the same time I just knew that Ethan was going to pull through. I’m sure that part of my confidence and trust came from my childhood experience at CHKD.”
Ethan was hospitalized at CHKD for six weeks and spent the first week on a ventilator. During that time, Ethan was nourished through total parenteral nutrition – a mixture of glucose, protein, fat, vitamins and minerals – administered through an IV so bacteria couldn’t harm his already diseased stomach.
“Ethan responded to treatment well,” Dr. Khan said. “We always prefer to use medical treatment, antibiotics and IV nutrition to bring our babies back to health, as opposed to surgery. Ethan is a great example of how well babies can recover from NEC.”
Two years after Ethan’s ordeal, and 13 years after his mother’s illness, both are healthy, happy and enjoying life. Jessica is studying nursing and plans to care for premature babies. Ethan, now 2, is a rock-solid 30 pounds of energy and love.
“He is so amazing. He’s such a handful that you’d never know how fragile and tiny he was as a newborn,” she said. “I’m looking forward to the 2008 CHKD Radiothon. I’ll be thanking everyone – the transport team, the chaplains, the NICU support group, the nurses and doctors. The support I received and all of the resources at the hospital got me through that tough time – two tough times – and Ethan is 100 percent recovered.”
Dr. Khan practices with Children’s Specialty Group PLLC at CHKD. Dr. Penix practices with CHKD Health System’s Neurosurgery practice.
This story was featured in the fourth quarter 2008 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.