'So hard to let my baby go': Mom meets toddler who received heart from her dying baby girl

A Kentucky baby girl who died in January is living on through the boy she donated her heart to, and her mother was finally able to meet the boy and listen to his heartbeat earlier this year.

Denise and Johnny Bargo live in Corbin, Kentucky, about 90 miles southeast of Lexington. Their daughter, Lena Skye Bargo, died on Jan. 17 at nearly 1½  years old. Surgeons had previously given her a shunt to redirect fluid from her brain. It ruptured, eventually causing her death.

“She went to sleep and she never woke up,” said her mother, Denise, who adopted the baby from a family member.

After her son Cody Taylor suggested she make Lena an organ donor, her kidneys went to a 44-year-old man, her liver went to an 8-month-old baby girl and her heart went to Mark Clouse Jr., who was 15 months old at the time.

The Bargos got to meet Mark and his mother, Patience Clouse, for the first time on Sept. 14 after Amanda Hara of television station WSMV 4 Nashville organized the emotional meetup, capturing it on film.

They met at the Clouse home in Tennessee.

“I got to hold him and I got to listen to baby Lena’s little heart,” Denise told USA TODAY Monday afternoon. 

Read more:When this toddler needed a heart transplant, he got a corridor of support to go with it

Denise said she found out Lena’s heart went to baby Mark Jr. because her niece was following Mark’s story. She had seen his mother post on Facebook that he was receiving a heart from a baby girl at the university’s hospital.

“We put two-and-two together and we reached out to Patience,” Denise said. “She agreed to talk to us and that's how we found out.”

Denise and her husband have met him three times in total. His mother called them his godparents, they said.

“We’re all one big family now,” Denise said. 

Mother diagnosed with cancer while daughter fought for her life

Baby Lena was born during summer 2022 at 28 weeks old. She weighed just one pound at birth, Denise said.

Doctors didn’t expect her to survive because she had hydrocephalus. Cerebrospinal fluid had built up in her brain. She spent 2½  months in the hospital before Denise and her husband could take her home.

Doctors installed a shunt to redirect the fluid from her brain, said her mother, Denise. 

The baby girl saw pediatricians and neurologists. She also took physical therapy every Monday since she hadn’t taken many steps on her own, and had a back brace to strengthen her back.

In December, Lena got sick. Doctors ran an MRI and said her shunt was working properly. Then in January, she fell ill again.

“I gave her CPR all the way to the hospital (in Corbin),” Denise said.

She was eventually flown to the hospital at the University of Kentucky, where surgeons were waiting for her.

“They went in to replace the shunt and the surgeon said it was like a tree root grew through her shunt and shattered it,” Denise recalled.

Doctors told her it was time to let Lena go on Jan. 13. That’s when doctors told her the child wouldn’t wake up.

But as the family waited for news on baby Lena, Denise was having chest pains. One of Lena’s nurses called another team to come and get her. She was eventually told to see a blood specialist.

“They sent me to the ER and that's when we found out that I have chronic myeloid leukemia,” she said. “It's in remission but I still get tired and I still worry about it.”

She credits her daughter with saving her life.

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Mom credits Lena’s big brother with life-saving organ donations

Denise said she had just found out Lena was passing away when her son, Cody, suggested they make her an organ donor. 

“That was my son’s wish for his baby sister,” Denise said, fighting back tears and calling him an amazing big brother.

After signing Lena up and making the arrangements, the family was told there would be an honor walk for the girl. That’s when people stand silently in the hallway of the hospital as patients are wheeled to the back for organ recovery.

Because Lena Skye donated her organs, her name will be added to the wall at the University of Kentucky’s hospital.

“It was a beautiful ceremony, knowing that Lena was going to live on,” Denise said. “She was going to still be living through baby Mark. She saved three lives – four counting mine – but it was so sad and so hard to let my baby go.”

And that same day, baby Mark had an honor walk of his own since he was preparing to receive a heart transplant, Denise said.

Mom and dad push for more research on shunts

Johnny, Lena’s father, said people need to learn more about shunts and how they work. 

“We did our best,” he said about caring for Lena. “Parents who have children with shunts, they really, really need to see the symptoms of the sickness that can happen.”

Denise said Lena had one shunt and wonders if having two shunts could’ve helped. She has blamed herself for what happened to her daughter but doctors say it’s not her fault at all.

The family remembers baby Lena Skye by carrying a wooden urn with her name and photo on it.

“We all loved her so much,” Denise said, crying. “To know that she’s living on in that little precious baby Mark is just a miracle. It’s the most amazing feeling in this world.”