BROOKINGS – Nov. 10, 2009, was a big day – a lifesaving day – in the life of then 9-year-old Amanda Heldt, daughter of Bill and Tami Heldt of Brookings: in surgery at a Mayo Cinic hospital in Rochester, Minn., she received a working kidney.
On Feb. 1, again at Mayo, she will receive a second kidney to take over for the first transplant that is now failing.
And again, Amanda will receive a kidney from a non-related live donor, because no family member is a transplant match. However, a week after Amanda’s surgery, Tami will be at Mayo and have a kidney removed that will be transplanted into someone else, in a sort-of one-for-one exchange for her daughter’s kidney.
“We’re all in a pool called the paired-donation program,” Tami explained. “They didn’t have the program in 2009. Amanda’s kidney is actually going to be flown from Arizona. Another family member like myself who can’t donate to the one they want.”
In a best-case scenario, a live-donor match for a kidney transplant would come from a family member, friend or acquaintance.
For Amanda’s first transplant, there was no family member who was a match. So Bill, transportation director for the Brookings School District, and Tami, who works at Swiftel Communications in downtown Brookings, found 11 people willing to test for a match. One of them was the mother of a school friend of Amanda.
Wendi Haug’s daughter, Taylor, and Amanda had met at a preschool program and became close friends. But between her kindergarten and first-grade year, Taylor died in a drowning accident.
Since Taylor had autism, epilepsy and other health issues, Wendi and her husband Kyle could relate to the Heldt family and what Amanda was going through.
Wendi was a match and became Amanda’s first kidney donor.
Looking back to the events preceding Amanda’s first transplant, Tami said, “Her native kidneys, one just stayed newborn-size and never grew. That’s how we discovered it. She just wasn’t growing; she had high blood pressure. The other one just shrunk to the size of a raisin.”
A contributing factor to Amanda’s health is Joubert syndrome, a rare brain malformation characterized by the absence or underdevelopment of the area of the brain that controls balance and coordination. Both kidney and liver abnormalities are often associated with the disorder.
Could write a book
“It worked wonderful for about four years,” Tami said of the first transplanted kidney. “Then in March 2013, we found Burkitt’s lymphoma.” It’s a fast-growing cancer of the lymphatic system; but being fast-growing, it responds to chemotherapy more quickly than slower growing tumors.
Amanda underwent four months of chemotherapy.
“She was in Sioux Falls for two days,” Tami said. “Then they flew her to Rochester (Mayo Clinic) and started chemo right away, trying to figure out what kind of cancer exactly it was. That took two weeks; but they were already starting chemo.
“After two weeks they found Burkitt’s, so they knew exactly what treatment to use; so she did about a month of chemo in Rochester. They figured out that they had the same regimen that could be finished in Sioux Falls.”
That was in July 2013.
But there was a side effect: the chemotherapy reduced the functioning of the transplanted kidney to 20 percent. That plus an elevated creatinine level qualified Amanda, now 17 and a sophomore at Brookings High School, for a kidney transplant – to replace the failing transplanted kidney she had previously received.
And following her daughter’s receipt of a kidney, Tami will donate a kidney, on Feb. 8 at the Methodist Hospital in Rochester.
For Amanda, the road back to Mayo for a second transplant has at times been a rocky one. “They found a mass in her stomach in November before Thanksgiving,” Bill said.
“They didn’t know what the mass was. She had a PET scan; she needed a clear PET scan before this transplant,” Tami added.
The scan revealed some benign growths, which were removed.
Looking back at what Amanda has been through and what might lie ahead, Tami said her daughter is “a kid who could write a book.”
For now Amanda’s stance is simple and straightforward: “Let’s get this done.” She’s eager to get back to school and dancing at Brookings to Broadway Dance Company.
In addition to Amanda, the Heldts have another daughter: Maisie, 18, is a student at South Dakota State University and majoring in nursing.
As to their youngest daughter’s future, Tami noted, “One of the things with Joubert kids is a fibrous liver. She’s managed to stay the same since we started medications when they discovered it in 2009.
“She’s like stage 3 of liver fibrosis, but it’s functioning well enough that she doesn’t need one right now. It’s just something that we’re always going to watch. She’s got a GI (gastrointestinal) doctor specialist at Mayo that checks her yearly.”
Following the transplant surgery, Amanda will stay in the hospital four or five days. “Then we have to stay in town for probably another three weeks, just for monitoring her blood and to get her medications just right,” Tami added.
Additional information about Amanda and her upcoming transplant surgery can be found at Carepages.com/carepages/amandaheldt.
Contact John Kubal at jkubal@brookingsregister.com.
