When Julie Kilkeary and her husband, Kevin, of Wexford, Pa., learned from an ultrasound that their first child had a rare and fatal heart disease, a doctor suggested an abortion.
Two years later, their second daughter was born with an unexpected neurological disorder so severe that the doctors gave the young couple the option of removing their baby from life support and allowing her to die in their arms.
Both times the parents turned to God for guidance — and chose life.
Faith, their first daughter, had heart surgery two days after her birth, then a heart transplant when she was about 18 months, on Jan. 10, 2005. Her sister, Olivia, was born three months later, on April 5, and despite multiple physical limitations, she is a bright little girl who operates her own wheelchair and communicates that she understands.
“Their lives have brought our family such joy and closeness, and they are a testimony to God’s mercy to everyone and his love for us,” Kilkeary said. “I am feeling very called to speak up for pro-life.”
They did so in October at their suburban Pittsburgh parish for Respect Life Sunday at the invitation of their pastor.
In for a shock
Kilkeary, 32, once worked in public relations and marketing. Her husband, 38, is in medical sales.
“I was a typical mom-to-be who daydreamed about whether we would have a boy or a girl, what the names would be and how we would decorate the bedroom,” she said. “I went into the ultrasound naively thinking that ultrasounds were made for finding out if you’re having a boy or a girl. I was in for a shock.”
The baby at 20 weeks gestation had signs of hypoplastic left heart syndrome, in which the left side of the heart is not developed. A pediatric cardiologist confirmed it and delivered the somber news: The baby would need heart surgery within two days of birth, another in six months, then more surgery by age 3. The chance of survival, he said, was only 65 percent.
“He said these were the sickest babies that you see, and that we were young and could have another,” Kilkeary said. “He tried to talk us into having an abortion. We told him it wasn’t even an option.”
They named the baby Faith while she was still in the womb, and expected that they would hold her as long as she lived after birth, and give her back to God.
“We started praying for God’s guidance, and a series of doors starting opening for us,” Kilkeary said.
They learned that survival rates were higher at hospitals in Philadelphia, and the Kilkearys pressured their health insurance company to cover them there. Faith was born at Penn Hospital and immediately taken to Children’s Hospital to prepare for surgery. Another operation followed in four months, but it soon became apparent that Faith was in serious trouble.
“We watched her get sicker and sicker as her heart wasn’t pumping the blood to where it needed to go,” Kilkeary said. “She was literally dying in front of our eyes.” The heart transplant saved her life.
‘We were chosen’
Olivia was born three months later, unable to breathe on her own and with severe neurological impairment of unknown origin.
“We could choose to have our daughter undergo a lifesaving tracheotomy and come home with the help of a breathing machine,” Kilkeary said.
Or they could choose to allow her to die.
When Kilkeary was crying at Olivia’s bedside, her husband said, “Julie, if God wants our baby, do you think he’s going to let this machine stand in his way?”
“That’s when it dawned on me,” Kilkeary told OSV. “This was not our choice. We were chosen.”
The couple took their baby home and went about the business of being the family that God had called them to be.
Their parents were then and continue to be supportive, Kilkeary said. Her in-laws, Kevin and Kathy Kilkeary, also of Wexford, have been helpful and strong, and Kilkeary draws inspiration from her own parents, Gary and Mary Schafer, of Greensburg, Pa.
“My father has had multiple sclerosis my whole life, and he is a strong person, and my mother takes care of him, and she is even stronger,” she said. “They have been good role models.”
Olivia is no longer on a ventilator, but she will never walk, talk or have use of her arms. She uses a head switch to operate a motorized wheelchair and attends Western Pennsylvania School for Blind Children in Pittsburgh, which includes students with many different disabilities.
The staff there recently recognized her “outstanding accomplishments,” noting that “Olivia is an immensely talented and intelligent little girl who tries very hard throughout her entire school day.”
Faith is a devoted big sister, and more than anyone, she knows Olivia’s moods and needs. On mystery reader day at St. Alexis School, where Faith attends, Olivia “read” to the class by using a switch to activate recordings that Faith made.
“I told the children that Faith has been Olivia’s voice for a long time, that Faith speaks for her sister,” Kilkeary said. “Faith is never embarrassed or shy about her in any way. Olivia is Olivia to her. And as far as herself, she knows that she is very special and that she has a new heart.”
Kevin Jr. was born on Dec. 26, 2007, a healthy little boy who came into a family filled with love.
“We are surrounded by love,” Kilkeary said. “And no, our faith never wavered. There were many very, very sad moments, but I cannot think of ever being angry at God. We asked for God’s love, and when his love is in your heart, there’s no room for anger.”
Maryann Gogniat Eidemiller writes from Pennsylvania.