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Young mother seeks kidney transplant

DEMITRIA KIRBY AND her husband, Jim, pose for a family photo with their daughters, Beatrice and Cecilia. Kirby is seeking a kidney donation after suffering birth complications this past July that severely damaged her kidneys. 
Photo courtesy of Demitria Kirby

MIDDLEBURY — July 2, 2023, is a day that Middlebury resident Demitria Kirby will remember for the rest of her life. 

In the early hours of that summer morning, Kirby and her husband, Jim, welcomed their second child into the world; a healthy baby girl named Cecilia. 

Four hours later, Kirby began suffering severe complications from the birth that would ultimately damage both of her kidneys and leave her in need of a kidney transplant. 

Kirby said that after delivering her daughter she started to hemorrhage and was taken into emergency surgery to remove a piece of the placenta that had not passed. 

“At that point, they also found out that my blood pressure was skyrocketing, and I had protein in my urine,” she said. 

Doctors informed Kirby that she was experiencing a syndrome known as HELLP, for Hemolysis, Elevated Liver enzymes and Low Platelets. It is a rare and life-threatening pregnancy complication that is considered to be a form of preeclampsia and often occurs in the third trimester or shortly after childbirth, according to the Preeclampsia Foundation.  

Following that discovery, Kirby was transported to Burlington’s UVM Medical Center for further treatment. 

“I woke up in UVM alone. I didn’t know where my baby was,” she recalled. “Unfortunately, I was still covered in blood from hemorrhaging, and I also had lost a significant portion of my eyesight, so I couldn’t see very well.” 

Kirby’s husband and newborn daughter later joined her at UVM, where she stayed for the next two weeks to undergo a series of biopsies, scans and procedures. 

Further testing revealed that Kirby has a rare genetic disease known as Atypical Hemolytic Uremic Syndrome (aHUS), which causes small blood clots to form in the blood vessels and blocks the blood flow to vital organs, according to the American Kidney Fund. 

As a result, aHUS can lead to kidney failure, heart disease and other serious health problems.

“(The condition) had been lying dormant in me, but the severity of the HELLP syndrome triggered it, and it caused the blood cells in my kidneys to burst,” Kirby explained. “The biopsy showed that my kidneys are 40% dead in necrosis.” 

Kirby has been on dialysis since July, a process in which excess fluid and toxins are removed from the blood when the kidneys are no longer functioning as needed. The Middlebury resident has also been receiving infusions of medication to treat her aHUS. 

“(The doctors) had hoped that my kidneys may make a recovery, but they have not,” Kirby said. 

In September, Kirby’s case was deemed End-Stage Renal Disease. The diagnosis, also known as kidney failure, means that her kidneys can no longer function how her body needs them to and that she will need a kidney transplant. 

“Before I left UVM, I asked my doctor, ‘What are my chances of my kidney coming back,’ and he said he couldn’t tell me but there was a good chance that I would need a transplant and that it could take time. Unless someone comes forward to request (to donate to) me, the wait is five to seven years,” she said. 

‘OUT OF NOWHERE’

The fateful series of events has come as a surprise for Kirby, 33, who had a fairly healthy pregnancy with her first child and has not struggled with severe health issues in the past. 

“It was completely out of nowhere. I’d never had blood pressure issues. (My blood pressure) actually always runs really low,” she said. 

Looking back, Kirby said she started noticing swelling and significant vision problems during the last month of her recent pregnancy. 

Kirby reached out to her doctor with her concerns and was advised to check her blood pressure. 

“At the time, my blood pressure was fine, so they thought it was just related to my anemia,” she recalled. 

Kirby said she went in for a doctor’s appointment a week before giving birth, and at that appointment her blood pressure was measuring higher than usual. 

“Because (the blood pressure) was not significantly high, they weren’t concerned,” she said. “Looking back, I do wonder if these were all signs that something was happening.” 

According to the Preeclampsia Foundation, HELLP syndrome can be challenging to diagnose, as symptoms of preeclampsia, such as high blood pressure and protein in the urine, are not always apparent.

Kirby said she wishes there was more guidance available for pregnant women regarding what signs to look out for when it comes to HELLP syndrome and similar conditions.

“The more research I’ve done on HELLP syndrome and other birth complications, a lot of them stem from blood pressure, and it’s amazing to me that we don’t send pregnant women home with blood pressure cuffs or do more education on signs and symptoms,” she said. “When I called the hospital to say that my vision was so bad that I was walking to work because I was scared to drive, they didn’t even ask to see me. Because they weren’t taking it seriously, I didn’t either, but now looking back, I wish that I had fought harder for them to see me.” 

SEARCH FOR A DONOR 

While she cannot change the past, Kirby is trying to remain optimistic about the future. She’s spent the past several months looking for a potential kidney donor. 

In September, she was referred to the UVM Medical Center’s transplant program and was accepted onto the list last month. 

“Unfortunately, the same week that I got accepted into the program, I got a letter in the mail saying that they lost one of their surgeons and surgeries would be delayed,” Kirby said. “They had asked the one surgeon that they do still have to try not to take time off, but when you’re waiting for a kidney, it doesn’t feel good to know that you’re dependent on one person’s schedule.” 

She recently requested to be referred to the transplant program at the Dartmouth Hitchcock Medical Center and is set to meet with officials there later this month. 

For organ transplants, donors must have a blood type that’s compatible with the recipient. However, Kirby said a potential donor doesn’t necessarily have to be a perfect match, due to transplant programs’ cross-matching system. 

Through the process, sometimes called Kidney Paired Donation or Paired Exchange, transplant centers can arrange for a “swap” between two pairs of incompatible donors and recipients. 

“I’m O positive, but even if they’re not a match to me, if they’re willing to donate to someone else who does have a match to me, (the transplant center) will swap us so that we both benefit from the kidney,” Kirby explained. 

While she waits for a donor to line up, Kirby is working to join the kidney transplant program at Brigham and Women’s Hospital in Boston. She has also created a website through the National Kidney Foundation (www.nkr.org/RHE956), where potential donors can learn more and begin the screening process.

THE ROAD AHEAD 

As she navigates the road ahead, Kirby said she’s thankful for the support she’s received from friends, family and others in the community. She currently serves as the associate vice president of safety at Middlebury College and said she’s received a lot of support from her employer in finding ways to continue working while she receives treatment. 

Kirby drives to Burlington twice a week for dialysis. She noted the four-hour treatment sessions have created new limitations for her and her family. 

“Unfortunately, Sundays are my only day to do fun stuff with the kids because Saturday is primarily treatments,” she said. 

Kirby is also receiving aHUS medication infusions every eight weeks. Now that the aHUS is active, Kirby will have to get these infusions for the rest of her life. 

“(The treatment) takes a toll on your body. When you think about it, your kidneys are working 24/7 and they’re trying to squeeze that work into a four-hour session,” she said. “I’m usually very exhausted by the time I get home, and I have migraines.” 

Even after Kirby receives a kidney donation, the birth complications she experienced in July will affect her for the rest of her life. She noted that the combination of aHUS and the damage to her kidneys has left her immunocompromised. Once she gets a new kidney, Kirby will be placed on immunosuppressants, which help prevent her body from rejecting the organ but will weaken her immune system. 

Kirby acknowledges that the past several months have been challenging in ways she never imagined, but she said she’s trying to focus on the positive. 

“I have a very healthy baby, I have a very healthy seven-year-old, I have a very supportive community, a very supportive employer,” she said. 

She’s also hoping to use this experience as a platform for change by bringing more awareness to maternal health and the signs and symptoms of pregnancy complications like HELLP syndrome. 

“So many complications come from high blood pressure, so (the fact that) the education on it is so minimal is disappointing. I think there needs to be more support for pregnant women,” she said. “HELLP syndrome can hit up to six weeks after you have your baby, so in a lot of ways I’m grateful that this happened while I was in the hospital. It happened so suddenly that if it had been a few days later and I was home with the baby, I may not have made it. I don’t think we do enough education for women around what to look for and what to do if they experience certain symptoms.” 

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