Lindsey Westendorf, the mother of 2 ½-year-old liver recipient Corbin Baker, firmly believes in the power of a mother’s intuition.
“Corbin was born on July 1, 2022,” said Lindsey. “He came out and they laid him on my stomach and my first words were, ‘what’s wrong with him?’ Believe it or not, everything was fine. He was beautiful, he was crying, but I just had this feeling that I could not shake.”
Around 24 hours later, Corbin was diagnosed with jaundice and stayed an extra day at the hospital. Lindsey brought him home but agreed to return the next day for lab tests to check his bilirubin levels.
“I got a call later that evening that I needed to rush him to the nearest emergency room,” she recalled. “His bilirubin numbers were extremely high, but the NICU doctor said he’d be fine after about 12 hours under the lights. I remember it like it was yesterday. I just knew something was wrong with my baby.”
Despite reassurances, Lindsey did her own research and trusted her instincts, insisting that it was more than just a severe case of jaundice. A nurse practitioner, who just so happened to be doing his rounds at the Peds, agreed.
“He said, ‘I think that you’re right, I think there may be something wrong. I want to send you to radiology to get an ultrasound.’”
The ultrasound revealed that Corbin was missing a gallbladder. In addition, his liver labs were off.
“I went down the rabbit hole of every article known to man,” recalled Lindsey. “By Sunday morning, I knew my baby had biliary atresia (BA).”
After connecting with a local mom on social media whose son had been diagnosed with biliary atresia (BA) two years earlier, Lindsey aimed to get Corbin diagnosed in time for a Kasai procedure. BA is a condition where the bile ducts are blocked or absent, and the Kasai surgery is most effective within the first three months of life. After numerous tests, Corbin was finally diagnosed with Alpha-1 antitrypsin deficiency (AATD) via a liver biopsy. Just a week later, at 7 weeks old, he was diagnosed with BA (biliary atresia). The combination was extremely rare.
“The transplant surgeon said, ‘Ms. Westendorf, his liver is too far gone to perform a Kasai. It’s best if we go directly to transplant.’ That was really hard for me to hear—but in hindsight, I’m so thankful that it happened the way that it did. God had his hand in every single step of this journey.”
Following a diagnosis, Corbin wasn’t immediately listed for a transplant—and for Lindsey and her partner, Greg, the wait was excruciating.
“You go home and watch your child die in front of you,” said Lindsey. “I woke up one day and my son was orange. His labs had shot up and he was getting sicker and sicker. On Nov 11, 2022, I wrote a somewhat scathing letter to his hepatologist demanding to be listed, saying he was literally dying in front of my eyes and that we couldn’t wait anymore. That was the week we got the pre-transplant testing done.”
On Dec. 2, at exactly 4:36 p.m., Corbin was placed on the liver transplant list. The next morning, Lindsey missed a call while she was in Starbucks with Corbin’s grandmother.
“We were sipping our lattes and walking into Walmart to pick out things for our travel bag, when I received another call from my partner, Greg, telling me we got ‘the call.’” He wasn’t even listed for 18 hours. I couldn’t believe it. I was sobbing in the middle of Walmart, and left my cart where it was.”
Corbin received his gift of life in the early hours of Dec. 3, 2022.
“It literally couldn’t have been a more perfect liver for my son,” said Lindsey. “In my heart, I know it was from a baby. I asked if they had to cut anything to fit it in his body, but the surgeon said it fit like a glove. I just broke down, because somebody else had lost their child, probably around my baby’s age. Had we not received that call, he probably wouldn’t have made it to New Year’s.”
Although Lindsay has been a donation advocate for years, she says that her son’s transplant has given organ donation a whole new significance.
“My aunt has had a double lung transplant, and my best friend’s sister had a heart transplant at 23-years-old,” said Lindsey. “I’ve always been an advocate for Donate Life and I’ve always been an organ donor, but it’s very surreal when your child is the one that’s saved.”
Corbin was discharged on December 23, allowing him to spend Christmas at home with his family. Since the transplant, there have been many ups and downs and numerous hospital stays. Despite these challenges, Lindsey is simply grateful to have her son by her side.
“There have been lots of bumps in the road, but I have my little boy every day,” she said. “Our main job is to protect that gift of life.”
Even after two years, Lindsey thinks about the donor family daily and knows she always will. She has written numerous letters, but hasn’t sent any, worried that her words might fall short.
“I go to write it, and it’s never good enough,” said Lindsay. “I’m actually in therapy, and we’ve talked about how it would be healing for me. I would love to know the donor family. I would love for them to watch Corbin grow. I would love to meet them; I would love to hug them. I don’t want them to ever think we’re not thankful.”
Besides therapy, Lindsey finds that advocacy and connecting with other BA moms on social media have significantly aided her healing. Collaborating with Donate Life and urging other mothers to trust their instincts and advocate for their children has profoundly impacted her life.
“You have to be your child’s advocate, because they don’t have a voice,” said Lindsey. “Advocating for Donate Life, advocating for my son, and helping others advocate has definitely helped me heal. For transplant parents, you will be blessed with the ultimate blessing—but it will not be easy. Therapy has helped the most and being in the here and now. I might be in and out of the hospital, away from my other kids and struggling to get work done, but I have to remember that I’m the lucky one. There’s another family out there that doesn’t have this. It might be heavy, it might be very hard, but my son is here.”
Lindsey urges everyone to register as an organ, eye, and tissue donor and potentially be somebody else’s “saving grace.”
“I’m just so thankful,” said Lindsey, through tears. “I’m so grateful that they chose the gift of life. There are just no words. They lost their most precious gift and were kind enough to pass that gift on. It’s the ultimate sacrifice. It’s truly the most selfless thing you can ever do.”
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