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By IOWA STEAD FAMILY CHILDREN’S HOSPITAL
IOWA CITY, Iowa — During a 16-week ultrasound, doctors gave Skylar Hardee’s (Hubbard, Iowa) parents a one percent chance of their baby surviving. The couple went to four doctors in four cities before being referred to University of Iowa Stead Family Children’s Hospital.
“My husband and I were trying for 10 years to get pregnant,” says Skylar’s mom, Rita. “After three miscarriages, we finally said we’re going to take a break, and then after a couple years, we decided to try again. The next month, I was pregnant.”
The ultrasound showed no amniotic fluid, “So we knew something was wrong,” recalls Skylar’s dad, Justin. “They said that without the amniotic fluid, there was no way the baby was getting food — or would ever grow in the womb.”
Rita remembers the doctor saying, “We can barely see the baby, and that’s the reason why we can’t see a bladder. We can only see one kidney, we see multiple defects in his heart; so, you need to go see a specialist.”
“They said that, most likely, there was a chance of survival of zero, so at that time they asked us what we wanted to do,” Justin continues. “They said the best bet would be to terminate pregnancy. We said, we are not going to do that. We have a strong heartbeat. He hasn’t given up on us, we’re not going to give up on him.”
They went to three more doctors in three different cities before being referred to UI Stead Family Children’s Hospital.
“Iowa City was the only place that would actually help us,” Justin recalls.
Rita was scheduled for regular ultrasounds.
“Every two weeks, the ob/gyn team specialists met,” Rita says. “That was great, because every time I came in, they always had a new idea.”
At 32 weeks gestation, she went into labor. The couple drove two hours from their home in Hubbard to Iowa City, where Skylar was born.
“(Neonatologist Jonathan Klein, MD) came, told me straight out to just ‘expect the unexpected, and we’ll take it one day at a time,'” Rita recalls.
Skylar was diagnosed with VACTERL association, a rare disorder that affects multiple organ systems. Those can include vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities.
“Skylar has six out of the seven,” Rita says. “He had surgery in the NICU (Neonatal Intensive Care Unit) room three days after he was born.”
“They put a vesicostomy in right away,” Justin adds, referring to the opening created between his abdominal wall and bladder. “Then he had a colostomy bag.”
Skylar spent 98 days in the NICU.
“Skylar went home with a feeding tube and a cardiac heart monitor, and I would have to take his blood pressure for his kidney every day,” Rita recalls. “It was scary.”
“We wanted to go home, but we were also nervous,” Justin adds. “They basically gave us the support and the knowledge …they set us up to succeed instead of fail.”
Skylar has had more than 20 surgeries and procedures, Justin says, “and all-in-all, he looks like a normal, healthy kid.”
Today, Skylar enjoys playing flag football and other sports with the help of a kidney brace — a shirt with pads — and wants to be a police officer.
“My son’s my world, and so this hospital means the world to me,” Justin says. “They gave me my dreams, my hopes. Since I was 18, I’ve been trying to have a son, and they made my dreams come true.”
