Today, approximately 17 people will die, waiting. Waiting on an organ that could give them a second chance. They won’t get one in time. And that death toll will repeat itself tomorrow, and the next day, and the next … It will sound a dismal echo every day of the week.
And every nine minutes, a new name goes on the list of individuals needing an organ transplant.
Brooke Lillie’s name went on that list when she was only 13 months old. She was diagnosed with restrictive cardiomyopathy — a long name that basically means her heart muscles were not functioning properly and the only solution was a heart transplant.
On Dec. 11, 1996 the No. 1 song in America was “Un-Break My Heart” by Toni Braxton. And on that same day, Will Miley and Kim Graves’ baby girl was given a new heart that wasn’t broken. It was perfect. They had waited five weeks, and the heart of a 13-month-old baby boy who was killed in a car accident was transplanted into Brooke.
“I would not be here today if that little boy’s mom had made a different decision,” Lillie said. “I am so very thankful that she did.”
So are the many patients Lillie now is able to help in her work as a cardiac cath lab nurse at South Central Regional Medical Center. It seems only fitting for her as a career.
If luck was on her side, Brooke’s heart would last about 10 years, her parents were told.
“My parents thought it would be great to celebrate my 16th birthday (hopefully),” Lillie said.
So far, she has celebrated 28 birthdays and counting.
While organ rejection is common with transplants, Lillie’s new heart turned out to be a perfect match and she led a very normal childhood. She attended Sumrall High School and was a cheerleader. She was also an athlete at the school, playing tennis and participating in track and field.
She was always eager to show her heartfelt gratitude for the gift she received nearly 25 years earlier. The little boy whose heart beats within her was named Dustin Newman. In April 2021, Lillie and her family got the chance of a lifetime to meet his mother and tell her how much her decision back then meant to all of them.
“It was very emotional and overwhelming,” Lillie said. She gave Dustin’s mom a recording of the beating heart that saved her life — Dustin’s heart. She wanted her to “always be able to hear her son’s heart.” She wanted her to know how grateful she was to meet the person who “ultimately decided if I lived or not.”
But this would not be the only transplant Lillie would need in her life. Heart-transplant recipients require medication that is hard on the kidneys.
“We knew from the beginning that this might occur,” she said.
A kidney transplant became needed in 2019.
Fortunately, she didn’t have to look very far to find a donor this time. It turns out that her best friend and husband Adam was a perfect match. So, on Sept. 23, 2019, Lillie received her second gift of life, this time a kidney from Adam.
Both of their extended families were there with them at Ochsner’s Hospital in New Orleans, where the couple's rooms were a couple of doors apart in the ICU. The support was moving for the Lillies. So were the dozens of “Team Lillie” T-shirts the crew wore.
“Our moms were our designated caretakers,” Lillie said. “His mom was his and my mom was mine.
“My husband saved my life. If not for him I would have been on a waiting list for years. He is my hero and truly my perfect match for life.”
A little over a year ago, the Lillies’ life story took another major turn when she learned that she was pregnant. It was the 26th anniversary of her heart transplant. She had been told that having children would not be possible, that there’s a zero percent survival rate for heart-transplant mothers and their babies.
Brooke and Adam had other plans, though. She could not shake the feeling of wanting to become a mother. She describes herself as being somewhat stubborn.
“I felt a peace in my heart, like everything was going to be OK,” she said.
Her team of doctors were on board, Lillie said, and arranged for the appropriate doctors and measures to be put into place in this next step of her life.
Baby Lauren came 8 weeks early on June 30 of last year. Otherwise, she was absolutely perfect. She required no oxygen, no tubes. The baby stayed in the NICU for 18 days, but now is a happy, healthy 7-month-old armful of joy and happiness for her parents.
“You will never convince me that God isn’t real,” Lillie said. “He carried us through, just like He promised. I will always share my story to give praise to God for all His blessings in my life.”
She is also quick to tell others about the life-saving difference that being an organ donor provides.
“It is so important to me,” she said. “I wouldn’t be alive without a donor. My daughter wouldn’t be here.”
This July, the happy parents will travel to Birmingham, Ala., to participate for Team Mississippi in the 2024 Transplant Games of America. The games are billed as the largest celebration of life in America. Many families of donors who made the ultimate gift will be there to participate as well and be honored.
Information on why and how to become an organ donor can be found at msora.org.
Those who want to can sign up to be an organ donor when renewing their driver’s license and will have a tiny red heart placed in the bottom right corner. That tiny heart can make a huge difference for many others … like Brooke Lillie.
Lisa Robbins and South Central Regional Medical Center contributed to this story.
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