From The Orange County Register
By Courtney Perkes / Staff Writer
Kennedy Blaylock, 8 months, tolerates a pre-op EKG prior to a surgery to help repair a complex congenital heart defect called hypoplastic left heart syndrome. This will be Kennedy’s 9th surgery. Kennedy was born with heterotaxy syndrome, a disorder that can affect multiple organs. Her mom, right, Ashley McNamara Blalock, spent her earliest months herself at CHOC as a triplet born prematurely. One of her brothers died there. After college, she went to work at CHOC as a child life specialist helping kids with cancer cope with their illness. (Ana Venegas, OC Register Staff Photographer)
Ashley McNamara Blalock grew up always knowing Children’s Hospital of Orange County as a special place.
Although her triplet brother died there and she spent four months in a preemie incubator, her parents pointed out CHOC whenever they drove by. Each spring, Ashley and her surviving brother cleaned out their closets to donate clothing to the hospital’s thrift store.
CHOC shaped even more of her life when she chose a career helping sick children cope with their illness.
But Blalock came full circle only after her daughter, Kennedy Marie, was born with a rare and potentially fatal birth defect, and like Blalock, spent her first months of life at the Orange hospital.
Mother and daughter will share a special day on Saturday when Kennedy celebrates her first birthday and Blalock marks her ninth anniversary working as a child life specialist at CHOC.
“We’re hitting huge milestones and it’s so amazing it’s going to be on the same day,” Blalock said. “I got to start my dream job at CHOC and who knew I was going to have my daughter on the exact same day I was hired? I went through my own medical situation and now I have a daughter that’s going through her own and at the same hospital.”
EARLY WORRIES
Blalock, 34, and her husband, Adam, learned 10 weeks into her pregnancy that Kennedy, their only child, wasn’t developing normally. Testing ruled out a genetic disorder, but ultrasounds showed a serious heart defect. She was born at St. Joseph Hospital and immediately transferred to CHOC, even before Blalock could hold her.
She was diagnosed with heterotaxy syndrome, where internal organs are abnormally developed and arranged. She underwent her first open heart surgery at 1 week old and was hospitalized for two months.
Kennedy has since had seven more surgeries, including another open heart surgery in June. When she’s 4 or 5, she’ll need a final heart surgery. While the Blalocks work, a nurse cares for Kennedy during the day at their home in Orange.
“You’d never know she’s sick or that she has a heart disorder,” Blalock said. “That’s what I love about her. She’s just so strong. She’s just so fun. She’s a joy.”
HISTORY REPEATS
Kennedy’s birth brought back intense memories for Blalock’s parents, said her mom, Leigh Ann McNamara of Orange. McNamara, 57, naturally conceived triplets and delivered them at 27 weeks in 1982. One of her sons, Shane, died at five days old, not long after the three babies underwent heart surgery.
“When Shane first died, I said, ‘I can’t go back into that unit,’” McNamara said. “But we have two other children fighting for their lives; we had to go back in.”
Then decades later, as grandparents, they returned to the neonatal intensive care unit.
McNamara recalled a difficult day during Blalock’s maternity leave when Kennedy had back-to-back appointments at CHOC. In the hallway, they ran into the mother of a little girl who was being sent home to die. Without hesitation, Blalock brought Kennedy to the girl’s room so they could meet.
“She’s the mom now of a child who’s critically ill, but she took that time and went,” McNamara said. “She knew what she had to do and went into action for that family. What do you say to somebody that just found out there’s nothing else and her child is going to pass away? There aren’t any words. Ashley just had a way about her that was so comforting.”
EMOTIONAL CAREER
Blalock works with juvenile cancer patients and their parents, providing emotional support as they navigate treatment, including comforting them while they undergo invasive procedures.
“Being on the other side was just mind boggling and eye opening,” she said. “Now I understand why parents can be difficult sometimes or just very, very fearful and scared.”
The first week back after maternity leave was particularly hard, as Blalock left her sick baby at home to spend her day with other sick children.
“You can be emotional but you have to be the professional one as well,” she said. “You can’t be consoled by the parent. There are times when I get in the car and I cry, or I cry in my office.”
As hard as it’s been to watch her daughter go through so much treatment, she takes solace in the reminder from her parents that Kennedy won’t recall any of her hospitalizations.
“She’s not going to remember all the pokes and the surgeries,” Blalock said. “I don’t remember any of that.”
But she wants to ensure that her daughter carries on the family tradition of cherishing CHOC.
“The doctors and nurses saved her life and it’s such a special place,” Blalock said. “We’ll always be grateful to them for taking such great care of her.”
Contact the writer: cperkes@scng.com 714-796-3686
