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By IOWA STEAD FAMILY CHILDREN’S HOSPITAL
IOWA CITY, Iowa — Aidan Kasper of Cedar Rapids, Iowa, has undergone countless tests and medical procedures, but his spirit is unwavering.
“He has a lot of inner strength,” says his dad, Rob. “I’m not sure exactly where he pulls that from, but he’s able to meet his adversity with a pretty positive attitude.”
Before Aidan was born, his parents had no indication their son would have any health issues, but that quickly changed.
“He didn’t come out crying,” his father recalls. “His skin was blue.” When his condition did not improve, he was transferred to University of Iowa Stead Family Children’s Hospital.
Rob rode in an ambulance with Aidan, who was admitted to the neonatal intensive care unit (NICU). Aidan’s mother, Montyne, followed after being discharged from the local hospital where she gave birth.
“That was probably one of the hardest days of our life,” Rob remembers. “We couldn’t hold and touch Aidan as our newborn.”
Aidan was diagnosed with Pierre Robin sequence, a craniofacial abnormality that includes a smaller than normal lower jaw, a tongue placed further back than normal, and a cleft palate—an opening in the roof of the mouth. The syndrome causes breathing and eating difficulties.
“Imagine taking a deep breath,” Rob says. “When Aidan does that, all the soft tissue collapses back there and partially obstructs his airway.”
Rob and Montyne had never heard of Pierre Robin sequence. “Like so much of Aidan’s health care moving forward, we found that we really didn’t know a lot,” Rob remembers, “but became more informed as Aidan got older and as we were introduced to more services and care here at the children’s hospital.”
The syndrome wasn’t the only medical challenge Aidan would face. Just months later, they noticed Aidan was unusually pale, and a family friend suggested he get checked. Aidan’s local pediatrician ran lab tests.
“The doctor came back to the room and says, ‘I want you to take Aidan back to Iowa City,” Rob recalls. “He said, ‘Do not stop at home, just drive straight to the ER and we will get you admitted.”
Doctors diagnosed Aidan with Diamond Blackfan anemia, a rare disorder in which a person’s bone marrow can’t make enough red blood cells, causing fatigue and shortness of breath. “There are about 600 to 700 cases in the United States today,” explains Rob.
Aidan’s life has since been a series of hospital stays and so far, approximately 40 surgeries. He also has biopsies to determine how much iron is building up in his organs. His anemia is treated through red blood cell infusions, something he’ll probably need the rest of his life. “In order for Aidan to survive, he gets packed red cells,” Rob says. “So far, I’m guessing about 250 blood infusions.”
He credits blood donors for keeping his son alive, along with the team at UI Stead Family Children’s Hospital. Rob cites the continuity of care program among those that helped his family develop an understanding of Aidan’s care plan. “They take a personal interest in your child, in your family,” he says. “I think it shows genuine caring.”
While he has hopes for the future, including becoming a veterinarian or herpetologist (a reptile/amphibian specialist), Aidan’s challenges have not only been his health.
In 2013, his mother died of metastatic breast cancer when he was just 7.
“He’s really a good example for me,” Rob says. “Aidan demonstrates to the rest of us that you can achieve greatness and overcome challenges that you’re given.”
