Frank Chimienti has been making serious medical decisions since he was 9 years old.
Long before he became a physician’s assistant in the orthopedic clinic at Valley Children’s Hospital — working with children ranging from those with cerebral palsy to broken bones — Frank was a patient at the facility when it was in Fresno. Back then, doctors diagnosed Frank with bone cancer in his right leg.
The options were that he could go through more rounds of medical treatment and chemotherapy, or the leg could be amputated above the knee.
“It was very scary,” Frank says. “I was going through chemo first. The first night I had to stay in the hospital, it really set in. We looked at other options but after hearing all of that, I just wanted it gone. I just wanted to be done with it. And there was the chance of the cancer coming back.”
Today, the only sign of his battle with cancer is the slight shuffle of his prosthetic leg. There’s been no recurrence of cancer.
Frank made another decision at that time that he never could have anticipated as being so important to him later in life. All he knew was that he wanted to work in the medical profession. His decision was based on the way he was treated by Valley Children’s staff.
It proved to be an even more personal move when he became a father.
Frank was 31 when Dorilyn, his wife of seven years, gave birth to Kathryn. The fertility drugs she had been taking resulted in triplets, but only Kathryn survived. That’s because Dorilyn started to go into labor at 20 weeks, but the doctors were only able to delay the births for another month through bed rest.
All the doctors could promise was that they could get her to 23 weeks, the earliest point where a child can be born and be considered viable.
Dorilyn went into labor at 231/2 weeks not knowing if any of the three triplets would survive. Kathryn arrived in the Saint Agnes hospital delivery room crying. The plan from the beginning was that if any of the babies survived, they would be immediately transferred to Valley Children’s neonatal intensive care unit.
“I knew this was the place we had to be,” Frank says.
The family spent the next 41/2 months at the hospital. The first complication was a brain hemorrhage, a condition common with extreme preemies. Katheryn weighed a mere 1 pound, 1 ounce at birth (equal to about the weight of four sticks of butter).
Kathryn — who is now 4 — was only 11 inches long and her whole hand could wrap around mom or dad’s pinkie finger. Dorilyn describes Kathryn as looking like a little baby doll.
Initial reports were good, but typically problems begin to arise after a few days because babies aren’t supposed to be outside the womb that early. That’s when the infant started having the brain hemorrhage, and that resulted in the cerebral palsy.
Brain injury or malformation causes cerebral palsy. Damage during brain development will affect a child’s muscle control, coordination and tone. It also affects reflex, posture, motor skills, speech and balance.
“The brain hemorrhage started when she was 2 days old,” Dorilyn says. “We always knew that we had a very sick child. But we also knew that she was fighting.”
Both parents had a moment when they wondered why they had been given this challenge.
“Then there was part of me that said, ‘What better person to go through this than me.’ Whatever disability she had, we could handle it. I had an idea of the prognosis because I see children like Kathryn all the time,” Frank says. “I’ve seen the best outcomes and the worst outcomes.”
Frank’s decisions decades ago gave him the knowledge to be able to understand exactly what was happening and what the couple would have to do to help their daughter.
Along with dealing with the effects of cerebral palsy, Kathryn had to have heart surgery to close a hole in her heart. Her lungs were underdeveloped, which resulted in her being on a ventilator for 101/2 weeks.
The combination of being on 100% oxygen and her brain bleeding had doctors ready to issue a do not resuscitate order.
“The doctors said it was up to us to decide if we wanted to continue care or turn it off,” Dorilyn says. “We said absolutely not and to keep going. We just knew she was fighting and wanted to be here. Although she was very sick, she was the strongest one.”
While her parents are talking, Kathryn entertains herself with many of the toys that are in the play area of the hospital. She moves around the room — with the aid of a tiny walker — to go from toy to toy.
Frank smiles and says that Kathryn does far better getting around than he had expected.
“It’s really miraculous what she’s done,” Frank says. “We love her and can’t imagine life without her.”
It’s a miracle that Frank is better able to help with his daughter’s physical development because of his days at the hospital all those years ago. Kathryn is using the walker during the hospital visit, but the strength in her legs has increased so that she can get around without the aid. It’s only long distances where she needs support.
There are some vision and speech difficulties, but overall her parents are optimistic that Kathryn will just get better and better. And, at the same time, Frank sees how having Kathryn in his life has made him better at his job.
“I understand what these parents are going through,” Frank says. “I understand what these families need and where to get it.”
As for finding himself in this second-generation situation at Valley Children’s, Frank thinks is just a matter of the way life works.
It’s not just dad who finds himself at the medical facility in his working role; Dorilyn is part of a support group for parents who have children in the neonatal intensive care unit at the hospital.
It’s the continuation of the family’s journey with the hospital, which started for Frank when he was only 9.