Anguish clouds the joy Emily Payne feels awaiting the arrival of her second daughter, whose birth is expected any day now.

But Paynes 3-year-old daughter, Rilynn, is also waiting for a kidney transplant, one she has needed since birth.

Three times, the Paynes have moved ahead to schedule a transplant. Three times, their hopes were put on hold.

The first time, doctors found cancer in Rilynns liver. The second time, Rilynn caught whooping cough, and the living donor also asked for more time.

The third time, they had a new living donor ready for the transplant, but then the COVID-19 pandemic stopped most transplant surgeries, particularly those like Rilynns that involve live donors.

The nations largest transplant centers have continued to do select, urgent cases using organs donated at death during the pandemic. But most organ transplants from living donors were suspended either because of difficulties transferring organs from deceased donors to other hospitals or because hospitals worried about bringing donors and patients in during a pandemic, said John Magee, Rilynns University of Michigan transplant surgeon.

April 19-25 is national Pediatric Transplant Week. More than 1,800 children under the age of 18 await organs nationally, including more than 600 who are 5 or younger, according to Gift of Life Michigan, which is helping the Paynes and other families with virtual support programs during the pandemic. Kidney transplants are the most in-demand across all ages. Of 112,758 Americans waiting for organ donations this week, 94,900 need a new kidney.

Dorrie Dils, the nonprofits chief executive, expects transplants to pick up as COVID-19 cases decline. Were all watching and waiting for those numbers to go down, she said.

On Wednesday, new national guidelines from the United Network for Organ Sharing, a private, nonprofit that manages the nations organ transplant system under contract with the federal government, went into place that allow transplant centers to resume kidney transplants. The change is likely to have the greatest effect on centers that halted all transplant surgeries during the pandemic because of infection, staffing, shortage of intensive care units and other issues, Magee said.

Magee hopes they can do Rilynns surgery in late May or June, as the University of Michigan Transplant Center and other facilities return to normal operating schedules.

On Tuesday, a day after her April 20 due date, Payne reacted cautiously to the good news that there may be a new timetable for Rilynns surgery.

Of course, Im excited to hear that, Payne said. At the same time, I dont get stuck on timelines anymore I just feel like it seems something always gets in the way.

Surviving Against The Odds

Twenty weeks into what seemed like a routine first pregnancy, a standard ultrasound test tipped off Paynes doctor that something wasnt right.

Rilynns kidneys were too big.

More ultrasound tests found that her kidneys kept getting larger, which threatened her lungs and heart, and there wasnt enough amniotic fluid to sustain the pregnancy. The excitement of a first-time pregnancy quickly turned to shock, then despair, recalled Heidi Keister, Emilys mother, who lives next door to her daughter in Gobles, Michigan, west of Kalamazoo.

Keister filled in many details of her granddaughters medical history in a lengthy interview while Payne provided other information in two shorter interviews, between pauses for deep breaths.

They didnt expect Rilynn to live through the pregnancy, Keister said.

Ultrasounds allowed doctors to pinpoint the cause of the enlarged organ: a hereditary kidney disorder known as autosomal recessive polycystic kidney disease (ARPKD), which causes cysts to grow and enlarge the kidneys. It affects one of every 20,000 babies born in the U.S.