By IOWA STEAD FAMILY CHILDREN’S HOSPITAL
IOWA CITY, Iowa — Doctors discovered Andrew Morlan (Cedar Falls, Iowa) was in kidney failure shortly after he and his twin brother, Isaac, were born. He was rushed to University of Iowa Stead Family Children’s Hospital, where he spent two months in the Neonatal Intensive Care Unit.
Doctors determined the two had twin-to-twin transfusion syndrome, in which blood supplies of the twins become connected in the placenta.
“One twin becomes the donor and the other one the recipient of the blood,” Karen explains. “With the lack of blood, Andrew ended up with kidney damage.”
Doctors determined Andrew needed a kidney transplant, but he was too small for surgery. Andrew’s parents were trained in dialysis before he was discharged, using a machine that functioned as his kidneys.
“We had to weigh him in the morning, and we had to weigh him at night,” Karen recalls. “(The goal was) to get him large enough to have a kidney transplant, because you have to be a year old and weigh 20 pounds.”
“Doing dialysis at home was a huge stretch for Karen and me,” adds Andrew’s dad, Ron. “But we learned a lot really fast.”
Andrew underwent cataract surgery and other procedures. By the time he turned 1 year old, he was still too small for the transplant.
“At 12 months, he was 12 pounds. At 13 months, he was 13 pounds,” Karen remembers. “We hit the point that some really hard decisions needed to be made. The amazing nephrology staff referred him to a hospital in Minnesota, because there was a surgeon up there that had actually done a transplant on a child smaller than 20 pounds.”
Karen donated one of her kidneys when he was 14 months old, and Andrew started growing and learned to walk. Years later, however, he was diagnosed with post-transplant lymphoproliferative disorder, which can result in cancer in transplant patients.
“To keep a transplanted kidney, we have to suppress his immune system,” Ron explains. “It also allowed some bad cells to grow.”
“Andrew literally woke up one day, and he was snoring like crazy. His tonsils were huge,” Karen adds. “We immediately had an appointment (in Iowa City) and met with the nephrology staff. He had surgery immediately, and then we moved into chemotherapy, reduced his kidney transplant anti-rejection medicines, and moved into IVIG (infusion therapy) to flood his system with good antibodies.”
Andrew also was diagnosed with eosinophilic esophagitis, an inflammation that damages the lining of the esophagus.
“Natural antibodies will fight the cancer, but then those antibodies also attack the kidney,” explains Karen. “Andrew went into an early rejection because his anti-rejection medicines were reduced for his cancer treatment. Since the time he was 8, we’ve just been fighting alongside his amazing staff to keep his kidney in his body and keep it in there as long as we can,” Karen says.
Andrew received a second transplant this summer at UI Stead Family Children’s Hospital with a kidney donated by his uncle.
“There have been long days,” Karen says. “Andrew has missed close to or more than a year of school due to being sick and hospitalizations. What he does love, though, is coming down to the children’s hospital. I know that he would say that he feels like he’s their only patient.”
“It’s important to have access to pediatric specialists because Andrew has so many issues, and one issue can lead into another issue,” Karen adds. “They do an amazing job of communicating with each other and amazing job of collaborating. Andrew would love to be a nurse in the future. He sees how well you can be taken care of by a nurse.”
“It honestly feels like they love me and care about me, and they’d do anything for me,” adds Andrew. “Why would I like to be a nurse? That’s what I’ve known my whole life, so it seems natural.”