Marcus and Callie Payne's journey to kidney-disease-free parenthood

Before he was even born, Marcus Payne's family knew that his kidneys were larger than normal and he would have a kidney condition. 

"[Marcus's mother] had to go get amniotic fluid injected into her belly from the time she was 28 [weeks pregnant] until she was 32 weeks [pregnant] because he was just sucking it all up," explained Marcus's wife, Callie Payne. "When they did an ultrasound, they could see his kidneys were big."

The lack of amniotic fluid and the large kidneys meant that Marcus has a rare genetic disease called, polycystic kidney disease (PKD). PKD causes fluid-filled cysts to grow on the kidneys. There are two types of PKD: autosomal dominant PKD (ADPKD) and autosomal recessive PKD (ARPKD). Both cause cysts to grow on the kidneys, but ADPKD usually does not appear until adulthood, except in rare cases like Marcus's when it can present in utero. ARPKD typically appears early in life, often before or shortly after birth. 

The cysts eventually damaged Marcus's kidneys, resulting in kidney failure. He had his first kidney transplant on June 24, 2010. After contracting BK virus, the necessary antibiotics to treat it damaged his transplanted kidney and Marcus began dialysis treatments. Fortunately, he received a new transplant in 2013 and has been living with it for the last 13 years. 

For Marcus, navigating PKD has just been a part of his life. When he met Callie, she learned early on in their relationship about his diagnosis. The two were married on April 22, 2023, but even before they were married, like many couples, they began talking about kids. 

"I always wanted to be a mom and have children and at that point, I [was] so in love with this person that whatever it takes, I [would] do it," said Callie. "And my mom is a labor and delivery surgical technologist, and she asked me, 'Are you okay if your baby has kidney disease?'"

PKD is a genetic disease. In ARPKD, the disease usually appears only if both parents pass on the gene variants, giving each child a 1 in 4 (25%) chance of having the disease when both parents are carriers. In ADPKD, one affected parent (like Marcus) can pass on the disease to a child with a 50% chance in each pregnancy.

"I was young, and I was like, 'Okay, one in two, one in two, maybe I'll get lucky,'" said Callie.

While some people decide they are willing to take the chance of their child having kidney disease, Callie and Marcus decided to explore other options. 

"The more that I grew to know and love Marcus [and] the more I think about this, [I decided to] figure out how we can prevent this in the future," said Callie. 

For people with PKD who want children, there are some options available to prevent their child having PKD as well, including adoption, sperm or egg donors from someone without PKD, and testing the genes of your baby early in the pregnancy. 

However, in recent years, a new option has become available as well. If you are choosing to do invitro-fertilization (IVF), you can also do pre-implantation genetic testing (PGT). Through IVF, the female's egg is fertilized by the male's sperm outside of the uterus. The fertilized egg (an embryo) is then implanted into the uterus so that the baby can grow until it is ready to be born. If a couple chooses to do PGT, the embryos are genetically tested prior to being transferred to the uterus.

There are still "limitations and ethical concerns" around PGT, as described in an article in Nephrology Times. Medically, there is a small risk of losing the embryo and there are sometimes false-negative results from the test. Ethically, there are concerns about "sex selection, genetic discrimination and the role of science and technology in reproduction assistance."

For the Paynes, Callie explained that they wanted to do what they could to ensure their "child didn't have to go through everything my husband's had to go through."

And so began a long journey to parenthood.

Marcus and Callie knew they would have to do IVF because they both had fertility issues. For Callie, fertility issues stemmed from secondary amenorrhea (the absence of menstrual periods), and in Marcus's case, they were related to dialysis treatments, taking anti-rejection and other medicines for years. When they began the IVF process, Marcus and Callie's fertility doctor asked if they had considered PGT for PKD. The doctor explained that through this process, the couple could screen the embryos for ones that have PKD and implant one without it. 

"I was on like six injections and some oral medicines as well [for egg retrieval]," said Callie. "I retrieved 46 eggs, which is a lot. We had 22 eggs that were fertilized,16 of them made it to the next stage and those 16 are what we sent off [for genetic testing]." 

Of the 16 embryos tested, six were kidney disease free. In March 2024, they implanted one girl into Callie's uterus. Unfortunately, the journey was not over yet.

"I lost [the pregnancy] at 10 weeks," explained Callie. This setback, understandably, gave the couple pause. "The first embryo, she was chromosomally normal. She was genetically normal. Like what happened?" 

Choosing to try again was not only emotional, it was also financially stressful as each cycle of PGT can cost between $6,000 and $10,000, on top of the expense of IVF. "After losing, I was like, 'how are we going to afford to transfer again?'" 

Callie eventually found PKD Free Alliance, which offers grants for families who want to do PGT to ensure their children do not have PKD. Callie and Marcus received assistance from the organization to help with the cost of genetic testing and IVF. "That was a big relief that I could go into it not being financially stressed," said Callie.

Physically, Callie discovered the issue with the first implantation was due to a clotting disorder she has called Antiphospholipid Syndrome (APS). Fortunately, it could be managed with medicine through another pregnancy. On Oct. 1, the couple tried again, transferring two embryos that did not have the PKD mutation. 

One of those embryos eventually became their daughter, Hazel Sue Payne, who is celebrating her first birthday today, May 28, 2026. 

"It was actually a really great pregnancy," said Callie. 

The couple still has three PKD-free embryos in a storage facility — two girls and one boy. They hope to give Hazel a baby brother someday soon.

Reflecting on the process, Callie said, "It is expensive, but once you go through it and it's successful, and that baby comes out and she's perfect and her belly's not huge and she doesn't have kidney disease, it's like, this is what it was all for… It's worth it."