Two Families Share Their Stories of Children Who Gave, Received Organs Through Transplant
In honor of National Donate Life Blue & Green Day, we're sharing the stories of an organ donor, Justin, and an organ recipient, Ellie.
Because of organ donation, the tragic death of 7-year-old Justin Owens produced a new lease on life for four other people.
Justin is one of 58 deceased patients at Cook Children’s who became organ donors from 2017 to 2021. Those donors provided 223 kidneys, hearts, livers, lungs and other organs for transplant surgeries across Texas and beyond.
Near the prayer garden on the Cook Children’s Medical Center campus in Fort Worth, names and ages are etched into a memorial plaque that pays tribute to patients like Justin who donated their organs after death.
First-grader Ellie Mullins, meanwhile, knows what it’s like to receive an organ. Ellie underwent a kidney transplant last year at Cook Children’s. The new kidney freed her from dialysis and gives Ellie the spunk and energy to play.
National Donate Life Blue & Green Day, observed every year on April 22, puts a spotlight on the campaign to raise awareness about organ donation. Supporters are wearing blue and green today to encourage more people to register as organ, eye and tissue donors. Almost 106,000 people in the United States are waiting for a lifesaving transplant, according to the American Transplant Foundation.
Understanding organ transplant requires two perspectives: the donor, living or deceased; and the sick person on the receiving end. In honor of National Donate Life Blue & Green Day, we want to explain the viewpoints and emotions from both sides. Here are Ellie’s and Justin’s stories.
The Organ Donor
Justin Owens was born on Oct. 31, 2012, the youngest of Samantha White’s three children. Justin was a happy baby who grew into a healthy and active child. With red hair and a friendly disposition, Justin liked to make people laugh. His family called him Bubby.
He was a Hot Wheels collector and a fan of Fortnite video games. By the first grade, Justin excelled at school. But what the Amarillo boy loved most was playing outside.
“He wanted to be on his bike. He wanted to be playing with all the other kids in the neighborhood,” Samantha said. “He only wanted to come inside if he had to eat.”
What happened on May 27, 2020, was a parent’s worst nightmare.
A 9-year-old playmate shot Justin with a 9mm handgun. The bullet entered Justin’s back on the left side and came out of his chest on the right side, at an angle that missed his heart but pierced both of his lungs and blood vessels to the brain.
It was about 5:15 p.m. and Samantha had just stepped onto her front porch to call Justin for dinner when another mom drove up with the news. Justin lay in the street and a police officer was performing CPR when Samantha arrived at the scene. She was too shocked and confused to cry.
For 17 minutes, Justin had no pulse. Samantha watched the paramedics drill a needle into Justin’s shin to inject a medication that finally got his heartbeat started again. He never recovered consciousness.
An ambulance rushed Justin to a local hospital, where doctors bandaged the wounds and did X-rays and CT scans. He received six units of blood due to internal bleeding. Justin’s injuries were extensive, the doctors told his mom. He needed immediate transport to Cook Children’s.
“I understand you're telling me that this is bad. But I know that God can do anything,” she remembers thinking.
A MedFlight plane lifted off around midnight with Justin, Samantha and a medical crew on board a quiet 40-minute flight to Fort Worth. An ambulance was waiting at the airport for the drive to Cook Children’s Emergency Department. Two chaplains sat with Samantha while the hospital staff tested Justin for COVID-19 and ran more X-rays and scans.
Justin was moved into pediatric intensive care so that doctors could monitor the swelling in his brain, their biggest concern. But they couldn’t stop the swelling or the compression on his brainstem. Machines breathed for Justin, drained fluid from his lungs, and blew warm air to regulate his body temperature. His urine output quit.
A representative from LifeGift, an organ procurement organization that partners with more than 200 hospitals in Texas, approached Samantha about the possibility of donating Justin’s organs.
“It caught me off guard,” Samantha admitted. “She was like, ‘Well, I think that that's something maybe you should just think about, and if you want more information, just let me know.’” Samantha accepted the LifeGift materials but initially dismissed the conversation.
But later, with no improvement in Justin’s condition, Samantha consented to an examination to establish whether he met the neurological criteria for brain death, defined as the irreversible cessation of all brain functions. The process checks for eye reflexes, response to stimuli and impulse to breathe. Justin didn’t respond. A second examination 12 hours later confirmed the diagnosis. The determination of brain death established Justin’s date of death as May 29, 2020, two days after he was shot.
Family members had driven in from Amarillo by this point. Samantha spoke with her two other children, then ages 10 and 14, for their input. She asked them: Why not let Bubby’s organs help someone else? The two siblings agreed.
Jennifer Hayes, director of Spiritual Care at Cook Children’s, said chaplains at the medical center accompany families through the grieving process. Depending on their faith tradition, she said, the chaplains will help families to honor their beliefs and values regarding organ donation. Through prayer and conversation, the chaplains help the patient’s parents process the information as families make the decision about organ and tissue donation.
“It gives them some autonomy and a sense that they’re still parenting. Love never dies,” Hayes said. “We’re constantly leaning into that Cook Children’s Promise that every child’s life is sacred.”
Keith Whitlock, a donation systems specialist at LifeGift, said hospitals notify LifeGift when a patient in intensive care might qualify for organ donation. While the medical team is still doing everything possible to save the patient, the LifeGift team begins assessing the radiology and other reports to determine eligibility. After the second examination confirms the brain death diagnosis, LifeGift speaks with the family to answer any questions about organ donation, Whitlock said. If the family consents, LifeGift runs more tests to determine which organs may be viable.
“We advocate for the donor family to offer some kind of hope on the worst day of their lives,” to provide a measure of hope when a loved one dies, Whitlock said. “They’ll say, ‘I hate that day, but I’m glad I chose to save lives through organ donation.’ That gives them some solace.”
While Justin’s mom was signing documents for the organ donation, his brother, sister, grandmother and aunts were allowed to view Justin’s body, which was still connected to life support. During that two-hour window for visiting, Lauren and Tyler made ink prints on canvas and plaster casts of their brother’s hands.
Samantha stayed overnight in a hotel and returned to Cook Children’s the next day for a final goodbye. “It's not him. I know that that was just his body there. And that the machines are just keeping him alive and his organs going until they can be sent to someone else. So I didn't stay,” she said. Samantha kissed her son and told him she loved him. Then she rode back to Amarillo to await the update from LifeGift about Justin’s organs.
The patient’s body remains on a ventilator to keep the organs oxygenated while LifeGift searches national databases for the most compatible match, the sickest patients at top priority. Every organ placement is arranged prior to surgery – with a second and third placement on standby. The organs are removed, packaged on ice, and taken to the transplant centers where the recipients are waiting. Organ-retrieval surgery typically happens within 24-48 hours of the donor’s death, Whitlock said.
On May 31, surgeons removed Justin’s heart, liver, both kidneys and pancreas for transplant to four patients, including a 9-year-old girl (heart) and a 17-year-old boy (liver). Two of the recipients sent letters, a comfort to Samantha. She wishes them the best.
“It's something that Justin would've wanted. He always was for helping everyone else,” his mother said. Another factor influencing her decision was the memory of her aunt, whose life was extended thanks to the kidney she received from a deceased donor. Samantha has no regrets about her decision.
Samantha and her family no longer live by the street where the shooting took place. They moved into a new home south of Amarillo, where Justin’s memory is preserved in photographs, a stuffed giraffe and other items on display. The tires on his beloved bicycle are flat, but Samantha can’t part with it. The first year after his death was particularly rough.
She recalls hearing teachers talk about the impact Justin made in school as a mediator, problem solver and social initiator among his peers. “I got stories from all the other moms in the area that Justin was their kid's first friend. And Justin was the one that introduced all the kids to the other kids. He was always nice to everyone,” Samantha said.
She wants people to know that the tragedy of losing a precious child can turn into a life-saving gift for someone else through organ donation.
“There's a piece of him out there, and they can still change the world. Like this girl who got his heart -- maybe she'll be an astronaut one day, like he wanted to be. And then he still gets to do what he wanted to do."
The Organ Recipient
During a trip to SeaWorld San Antonio five years ago, Dathan and Abigail Mullins first noticed swelling around their daughter Ellie’s eyes.
“It had been a really hot sweaty day. We thought maybe sunscreen got in her eyes and she had some kind of irritation or allergy,” Abigail remembered. They returned home to Lubbock and took 2-year-old Ellie to her pediatrician. “He immediately knew that something was off and he thought to check her kidneys. We’re really thankful that he didn't pass it off as some kind of allergy.”
Lab tests revealed a high level of protein in Ellie’s urine. A kidney biopsy later showed the diagnosis: a rare and progressive condition that causes irreversible scar damage. Instead of retaining proteins in the blood where they belonged, Ellie’s scarred kidneys let the proteins spill into her urine. With her kidneys unable to do their job -- filtering waste and extra fluid out of the body – water was being retained in her tissues. She was swollen and tired all the time.
“She really wasn't able to live a fulfilling life,” Abigail said. “She just spent a lot of time just laying around.”
No specialist in Lubbock could treat pediatric Focal Segmental Glomerulosclerosis (FSGS), and so Ellie came to Cook Children’s in 2017 hoping to get the disease under control. Randa Razzouk, M.D., a nephrologist at Cook Children’s, said Ellie’s case of FSGS was aggressive and resistant to treatment. Her treatment strategies included:
- steroids and immune suppressive medications
- a restricted, low-sodium diet to target her swelling and high cholesterol risk
- four-hour infusions of albumin every day, to replace lost proteins and give her a temporary energy boost
“We got to a point where she wasn’t responding to treatment,” Dr. Razzouk said. “We tried everything. So we thought that the kidneys are causing more harm than benefit because she kept on losing the protein.”
By the time Ellie went into kidney failure at age 5, a kidney transplant looked like her best option. Dr. Razzouk said an evaluation by Cook Children’s determined that Ellie was a good candidate medically, emotionally and socially – a decision based in part on confidence that after the procedure, her parents would adhere to the medication protocols needed to prevent organ rejection.
Next, both of her kidneys were removed in a surgery called nephrectomy, and she began dialysis as a temporary transition. Abigail, an elementary music teacher, and Dathan, who works in technology, learned how to operate the peritoneal dialysis machine at home. The machine inserted a cleansing solution into their daughter’s abdomen through a catheter, washing out the waste and excess fluid in cycles that took about eight hours to complete every night while she slept.
“While it’s a lot better than traveling to a dialysis center every day, it’s still really taxing,” Abigail said. “And no little kid feels good about having a tube constantly sticking out of their stomach.”
Ellie began to feel a bit better once she was stabilized on dialysis. Meanwhile, the process of finding a new kidney got underway.
Dr. Razzouk explained that kidney transplants from living donors have a higher success rate than organs received from deceased donors. But because Abigail and Dathan adopted Ellie when she was an infant, she wasn’t biologically related to them or to her big sister, Leah. Ellie needed a kidney from a donor with O-positive blood. Her family members weren’t a match.
Other considerations besides blood type come into play during the screening process too. Doctors take into account the age and size of the kidney, looking for the most appropriate fit. A kidney from an adult might work even for a child with Ellie’s petite stature.
The family got their hopes up the first time Cook Children’s called with a potential kidney. Because they live in West Texas almost five hours away from the medical center, the family had to be notified right away, before the organ was 100% matched to Ellie.
“We started driving over to Fort Worth, but then it turned out to be too big, so they sent us back home,” Abigail said. “They had told us there would be a couple of false alarms. We’re further away and they want us to get over there as soon as possible even though it might not work out.”
On June 19, 2021, another phone call … this time it was a definite match. The kidney came from a deceased donor whose family chose to remain anonymous.
Abigail and Dathan went numb. Their bags were already packed; they loaded the car and drove with Ellie as fast as they could to Cook Children’s. All the rushing around made Ellie excited and nervous at the same time. Surgery was scheduled for early the next morning.
After checking in at the hospital, Ellie took a shower, put on her Ariel princess nightgown and did some crafts until bedtime. Her parents felt relief after waiting for months on the organ transplant list, but also anxiety about potential complications. There was a 30-40% chance the FSGS could recur after the transplant. “Just remember to breathe,” Abigail told herself.
The next morning, Blake Palmer, M.D., medical director for Cook Children’s Urology, made an incision on the right side of Ellie’s abdomen. Dr. Palmer connected the artery and vein from the donated kidney to Ellie’s blood vessels. He also connected the ureter from the kidney to Ellie’s bladder. In just a few hours, Dr. Palmer had hooked up the blood supply and the channel for urination in Ellie, one of 16 renal transplant recipients at Cook Children’s in 2021.
Two days after the surgery, Ellie again began to swell and put protein in her urine. The FSGS was attacking her new kidney. Doctors worked to hydrate the kidney without making her swelling worse. Ellie needed catheters to remove excess fluid from her body, a process called aquapheresis. She was also treated with plasma exchange and immunosuppressive medications. Finally, her disease went into remission. Ellie went home 10 weeks after surgery.
“She's doing great. it's been totally different,” Abigail said. “She has a lot more energy all day long from morning to night. She can go do normal kid things, and she's back in school finally and she loves it.”
No more restricted diet; Ellie can eat all the foods she loves. No more infusions or dialysis; instead, she gets to run and ride her bike. “I’m really fast,” she reports. “I’m good at writing. I’m not good at staying calm.” She’s careful to protect her abdomen area during active play. Ellie doesn’t remember much about life before her new kidney.
To prevent her body from rejecting the new organ, Ellie takes immunosuppressive medication twice a day. She must drink 64 ounces of water daily. And the Mullins family travels to Cook Children’s once a month for checkups and blood work, so that the doctors can monitor her kidney function, adjust medications and make sure the scarring doesn’t recur. Those trips to Cook Children’s will eventually phase out.
Ellie will probably need another kidney transplant in 15-20 years, Dr. Razzouk said. She sees a huge transformation for patients like Ellie who recover from kidney disease thanks to the generosity of a stranger who consented to organ donation.
“Her life changed drastically from this kid who's always sick, who is always swollen, always tired to this kid who is now happy, joyful, living a normal life like her sister, instead of being different,” Dr. Razzouk said. “Organ donation saves lives and it changes lives.”
Ellie and her mom wrote a letter to the family of her kidney donor. They don’t know the donor’s name, age, gender or circumstances of death. Abigail hopes that their letter brings the family some peace.
“I know it's difficult if you're going through the traumatic loss of a loved one to still decide to let the doctor ask the questions and go through the surgery to harvest the organs. I just can't imagine thinking about all that on top of a big loss,” Abigail said, through tears. “We know that it's a big sacrifice to do that in your time of loss. But it makes such a huge impact in someone else's life.”
The Mullins family plans to celebrate the one-year anniversary of Ellie’s transplant this June. Her parents had been completely in favor of the transplant even though they weren’t sure how much improvement to expect in her health and quality of life.
“We were worried that it might just be slightly better or not too much different than dialysis, but it is really a night and day difference.,” Abigail said. “It’s been a huge blessing for our whole family. She feels so much better. She is so happy just living life.”
The Renal Transplant program at Cook Children’s Health Care System is one of only a few certified pediatric transplant centers in Texas. For more 25 years, Cook Children's has been providing lifesaving kidney transplants to children as young as 1 year old who meet weight criteria. Our multidisciplinary team includes specialty doctors from Cook Children's nephrology, urology and infectious disease centers, as well as transplant nurses, social workers, dietitians, Child Life specialists and pharmacists. Support for patients and their families continues long after surgery. From regular checkups to monitor your child's new kidney function, to questions or concerns about medications and activities, we're here to help. To schedule an appointment or speak to our staff, please contact our offices at 682-885-2871. Renal Transplant (cookchildrens.org). For more information, visit cookchildrens.org.
LifeGift supports families through the organ and tissue donation process, delivering lifesaving transplants to those who need them. Almost 10,000 Texans are awaiting a transplant. For more information or to register as a donor, visit LifeGift – Shining a light of hope for organ and tissue donation.