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October 12, 2012

'I have to wear her shirt': Liver recipient keeps memory of young donor alive

When West Virginia University beat Texas, 48-45, on Saturday night in Austin, they announced the attendance as 101,851.

They were wrong.

In reality, there were 101,852.

Taitlyn Shae Hughes was there, too, and this is the story she shares with a Texan named Nefeterius Akili McPherson, the woman who owes Taitlyn her life, having received her liver after she died on Nov. 6, 2011, of a brain hemorrhage.

McPherson is 37. Taitlyn Hughes was 12.

Still recovering from the transplant procedure she went through after suffering from a rare bile duct/liver disease called Secondary Sclerosing Cholangitis, McPherson has become an activist for organ transplants, and this is the story she tells that has gone viral on the Internet, the one that led her into the stands at West Virginia’s football game last Saturday night, wearing Taitlyn’s gold and blue T-shirt, the one that reads:

TRUE

GOLD

And

BLUE

Be a Mountaineer!

Before we introduce you to Nefeterius Akili McPherson, a lifelong Texan who graduated from SMU, obtained a law degree and worked in the Obama administration, and inform you how she found herself being told that she needed a liver, let us take you to the events that were to come when she learned that a liver had been found for her just 5 1/2 months after she was put on the waiting list.

She had been called into Georgetown University Hospital in D.C., awaiting final word that the liver was available. She was all set to move forward.

“Here comes the transplant team, and they tell me we’re headed over to Children’s Hospital,” she said Wednesday in a phone call from her home in Killeen, Texas. “I was already nervous. You try to prepare for that moment, but you can’t. My heart was beating fast. Then all of a sudden I have the doctor telling me we’re going to Children’s Hospital.”

Children’s Hospital?

“Excuse me. My donor is a child?” she said to her doctor.

The doctor looked at her quizzically.

“I don’t think he meant to give me that information, just said that in passing without realizing the effect it would have on me,” she said.

“He was quiet for a moment, then said, ‘Yes, your donor is an older child.’”

“Older child” is something of a contradiction in terms, and McPherson’s mind was whirling, noticing he didn’t say teenager, figuring she was getting the liver of a 10- to a 12-year-old child.

“I just kind of went into some zone,” McPherson recalled. “It was like I saw his mouth moving but I couldn’t process anything else after ‘older child.’ I just turned over and cried in my hospital bed, thinking, ‘How am I supposed to be happy today? How am I supposed to want this liver, a child’s who has died?’ All I could think about was this child’s family, right up until they put me under.”

Twenty-four hours earlier Taitlyn Hughes had been a seemingly happy, beautiful 12-year-old who had awakened for school but soon was complaining of a severe headache. Her parents thought it was a migraine as they both suffered from migraines, and they got her some Advil and a can of Sprite, but she rejected them, ran downstairs and began vomiting.

They put her to bed and could not wake her later to take a hot bath. An ambulance rushed her from her home in Hedgesville to the hospital in Martinsburg, then airlifted her to Children’s National Medical Center in Washington, D.C., but it turned out there was nothing that could be done. She was in a coma, suffered a stroke, and the parents were informed she would not make it and asked about being an organ donor.

Taitlyn Hughes had expressed to her mother a desire to donate her organs if anything ever happened to her, and so when she died, her kidneys, pancreas and liver were donated to four people.

McPherson was one of the recipients.

Normally, you do not learn the identity of your donor, but McPherson says she found out even before she left the hospital.

“I’d been to the hospital so much all the nurses were excited. I’d been there so often. I felt I was a frequent flier. I was in and out of that transplant floor so much that even the transportation people who take people around in wheelchairs knew me; the food service people knew me.”

In this Internet age, secrets are hard to maintain.

“I knew another man who was transplanted at the same time, and we were on the same floor. He was also 37,” she explained. “Somehow his girlfriend was able to take some information she received and found Taitlyn’s obituary online. Good old Facebook.”

The story contained the information that she had donated organs to four people, one a 37-year-old man, one a 37-year-old woman. It wasn’t official, but she knew.

“I was stalking her Facebook page and reading about this beautiful soul,” she said. “They actually took my computer away because I was trying to recover, and I’m emotional because I received the transplant and now I’m doubly emotional because my donor is a child and I’m looking at these beautiful pictures and her family is so distraught and her friends are mourning her. It was just too much.”

Four months after being released, McPherson was planning to write a letter to Nicole Siva, Taitlyn’s mother, but was surprised when she received one from her.

“I am a lawyer. I’m an English major. I’m a writer. I shouldn’t have any problems, but writing that letter was one of the hardest things I’ve ever done, especially after she had sent her letter to me,” she said. “It’s hard for any recipient, but especially when you are talking to someone about her child. I finished my letter on the day that was Taitlyn’s 13th birthday.”

While writing, the emotions kept grabbing at her.

“You can’t imagine the pain she had, but you can feel the pain,” she said.

A meeting was arranged, and McPherson came to West Virginia.

“You can’t prepare for that,” she said. “We had the best time sitting and talking. We’re around the same age, maybe even the exact same age. I almost felt like I was seeing a girlfriend I hadn’t seen in a while.”

Siva was shocked when McPherson walked through her door.

“As soon as she walked in I noticed the similarities between her and Taitlyn — their smiles, their beaming personalities. It was uncanny,” Siva recently told The Charleston Gazette. “They both loved football; they’re both incredibly photogenic. They’re both people who everyone wants to be around. Taitlyn was a kind, generous, gentle soul, and I got that same feeling from Nefeterius when I met her.”

It was similar for McPherson.

“It was humbling when Nicole took me upstairs into her room. Everything was as it was. She had the two aspirin she tried to give Taitlyn to help with what she thought was her migraine. I could feel Taitlyn’s spirit, realizing I am standing in the room of the person who gave me a second chance at life, knowing her liver was inside me.

“Sometimes I just stop and think, ‘Wow, I have someone else’s organ inside of me.’”

The two women talked, and eventually it became time to leave.

“Before I left, Nicole said, ‘I want you to have something.’ I’d gotten them some gifts. She gave me a bracelet, then all of a sudden she pulls out this shirt. She says, ‘I want you to have this.’ I was speechless,” McPherson said. “No one cried, but that brought tears to my eyes.”

And so she went home.

While there, however, she saw in the paper that WVU was playing at Texas.

“I kept the shirt in my apartment, and when I went back to Texas, I brought it with me. That shirt had to come with me. At the time I wasn’t thinking about WVU having joined the Big 12 and that WVU would play Texas,” she said.

“Then, I look at the schedule and all of a sudden I thought, ‘Oh, my gosh, this game falls on my 11th-month anniversary of my transplant.’ I have to be in Austin ... and I have to wear her shirt.”

Easier said than done.

“At first I thought, ‘I can’t wear it,’ but Nicole convinced me. She said she thought Taitlyn would want me to. It was so great, walking around campus with my cousin in his UT gear, people giving him a hard time about letting me wear that shirt, but I’d tell them, ‘I’m from Texas and this is my donor’s shirt.’ Their immediate reaction was unbelievable; they’d hug me and they’d understand.”

Next will probably be a reunion with Taitlyn’s family at a West Virginia game in Morgantown, there being a strong online push to make that happen.

---

Story from The Times West Virginian

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