Living with a stranger’s heart 5

By Mandy Kent

She met Miss America 2001, Michelle Kwan and President George W. Bush. But what’s astounding about Huntington University sophomore Leah Smith is that she’s still alive.

Leah was born with an underdeveloped heart. She received a heart transplant at just 11 days old. Her parents, Creager and Joan Smith, of Fort Wayne, Ind., were told her life expectancy with the new heart was 10 years. Leah, now 19, has spent much of her life educating others about the importance of organ donation.

“She’s beaten the odds,” her mother said. “She’s full of lots of different miracles.”

Leah was born at DeKalb Memorial Hospital in Auburn, Ind., on Maundy Thursday, March 28, 1991. Joan said that Leah was born full-term and that there were no problems during the pregnancy. Once born, though, she had problems breathing.

After running tests, a doctor discovered that Leah’s heart was underdeveloped and sent her to Lutheran Hospital in Fort Wayne. There, she was diagnosed with hypoplastic left heart syndrome (HLHS).

HLHS, according to the American Heart Association’s web site, is a disorder in which the left side of the heart is underdeveloped; the holes in the artery and septum did not properly mature and close, and the aorta and left ventricle are too small.

Leah’s doctor at Lutheran had just returned from a conference where he had learned about this disease. Joan said that she and Creager were told by this doctor that “only some heroic surgery was going to save her life.”

Leah was sent to Riley Hospital for Children in Indianapolis, where the diagnosis was confirmed. On Easter Sunday, the staff at Riley told her parents that the medicine she had been put on could keep her alive for four weeks. Joan said they were given three options. They could do nothing and let her die, try a procedure with a short life expectancy or try to get a heart transplant. Leah’s doctor told Joan and Creager that he did not recommend the heart transplant.

“The average wait for a heart was four weeks, so the odds of her getting a heart were very slim,” Joan said. “And then even if she had to wait the full four weeks, she would deteriorate quite a bit during that time and not be able to take the heart.”

Joan said she and Creager “met our angel” on Easter Monday. The nurse coordinator of the transplant program told Leah’s parents that she was an excellent candidate for the transplant program because she had no other medical complications.

Riley had been successfully transplanting hearts for three years at this point in time, Joan said, but only one surgeon was on staff who was able to perform the operation. He was on an unreachable vacation when Leah arrived at the hospital and would not be back for about a week.

“We were in a holding pattern because Dr. Brown was on vacation,” Creager said. “We couldn’t really do anything. We were truly in limbo until Dr. Brown got back from vacation. We couldn’t list her [for a heart transplant] until he got back.”

Creager explained that if a heart were to become available, they would not be able to accept it unless a doctor was able to perform the transplant operation right away.

Leah’s parents spent the week doing research—reading in the library, calling other hospitals and talking with the hospital chaplain and families who had gone through similar situations—while they waited for Dr. Brown to return.

“The week seemed like it went on forever,” Joan said, adding that it was all very overwhelming and like something from science fiction.

“[Heart transplantation] was a sensational thing from about 1986 to 1988 when they first tried newborn transplants,” Creager said, “and it kind of went away and they were quietly starting to do some of them, but it wasn’t really in the news. But when we were presented with it, it was like, ‘Wow, really? This is only something that happens on CBS Evening News.’”

After a week of evaluating their options, Joan and Creager decided to put Leah on the list to receive a heart transplant. They could take Leah off the list if, after discussing the transplant with Dr. Brown when he returned the next day, they decided that was best. They realized, however, that there was one thing that they still needed to do.

“We realized that we had talked to all these different people, trying to get somebody to tell us what to do, and of course no one could give us the answer,” Joan said. “So we went back to our room, and we realized we’d done all this talking and not once had we gone and talked to God, not once had we prayed about it.”

Joan said they asked God for “a big neon sign.” They decided that if a heart became available within three days, then they would assume they had made the right decision to list her for a transplant. If a heart did not become available within three days, they would let her go.

After praying, Joan said they turned the lights off in their room.

“As soon as we flipped out the light, a knock came at our door,” Joan said. “And it was Leah’s nurse, and she said, ‘Sorry guys, no sleep tonight because we have a heart.’ I remember I had to stand there a while, because the nurse had to put her hands on me and kind of shake me.”

Joan said the nurse told her and Creager that the hospital had contacted Dr. Brown and that he would fly in that evening and perform the transplant if they wanted to go through with it.

“It’s like God put the right people in the right place just one right after the other,” Joan said.

Leah went into surgery that evening, April 9, 1991, at about 10 p.m., just 10 hours after she was listed for a transplant. By 11 a.m. the next morning, the surgery was complete. Her doctors told Joan and Creager that they expected her to live for up to 10 years with the new heart.

“She had a huge birthday party on her 11th birthday,” Joan said. “Now, we’re not worried about it at all. We just think she’s going to live forever!”

According to the Organ Procurement and Transplantation Network, Leah was one of only five children in Indiana under the age of 1 who received a heart transplant in 1991. Since 1988, only 37 children in Indiana under 1 have received a new heart.

Ever since she was able to talk, Leah said she and her mom have been very active in educating the public about the importance of organ donation. She works with the Indiana Organ Procurement Organization, speaking to elementary school students, driver’s education classes and various civic groups.

Through organizations such as the Children’s Miracle Network and the Make-A-Wish Foundation, Leah said some of her biggest dreams have come true. She has met Miss America 2001, President George W. Bush and Olympic medalist Michelle Kwan, who inspired her to become a competitive figure skater for several years before attending college. She has also had the opportunity to lobby congressmen in Washington, D.C., to pass a bill to help children’s hospitals with funding.

“She’s had many neat opportunities to share her story,” Joan said.

Her most recent involvement was a joint project between IOPO and the Public Broadcasting Service. She is the host of an educational program for fourth graders that is frequently airing on PBS 39 in the Fort Wayne area.

Leah is majoring in broadcasting and is currently the promotions director for the campus radio station, Fuse FM. She said she hopes she can use the field of broadcasting to continue to educate people about the importance of organ donation.

Leah said that every six to eight weeks she goes back to Riley for a check-up, and once a year she has a biopsy and a heart catheterization. She takes nine medications twice a day, plus vitamins and minerals. The medicines help to suppress her immune system, which naturally tries to reject the heart.

“When very young patients need a transplant of any kind, they’re generally pretty sick,” said Sam Davis, director of professional services with IOPO, “but because of their youth, they respond well to treatment. Leah has already gone beyond the normal range of life expectancy for that particular heart transplant, and that has a lot to do with when she got her heart transplant. Her youth was somewhat of a benefit because her body became more adjusted to the medications that prevent rejection, and it acclimated well because she was so young.”

Leah said that having a stranger’s heart never made her feel different or excluded as a child, but rather she felt spoiled and special because she got to do things that most of her peers didn’t, like attend the 2006 Winter Olympics in Turin, Italy and meet the president.

The biggest struggle, Leah said, is having a weakened immune system because she easily catches colds and the flu. Her doctors require her to have a room to herself on campus so that she can control her own environment.

Leah said having a heart transplant and not knowing how long the organ will stay healthy is scary.

“My goal is to live life while I can,” she said. “There are few like me. No one knows what to expect. This is all still new. The infant transplants were new then; now a 20-year-old transplant is new. I am reaching another 10 years past my expiration date.”

5 thoughts on “Living with a stranger’s heart

  1. Reply Lucy Dafforn Nov 7,2010 3:24 pm

    Great article Leah!

  2. Reply Tammy Hawkins Nov 7,2010 5:30 pm

    This is a beautiful story. I am currently waiting for a Double Lung Transplant. Thank You for sharing your story.

  3. Reply Renee Bleke Nov 9,2010 7:31 pm

    We are proud of you Leah. Keep living your life for the Lord.

  4. Reply Todd Fiedler Nov 13,2010 1:06 am

    This is awesome. Leah…it sounds like you’re a really passionate devoted individual. The stuff you’re doing is really encouraging.

  5. Reply April Rowe Jul 2,2013 12:44 pm

    I’m so happy you found asecond heart and are doing so well. My daughter Savannah, has hlhs. We opted for the surgeries instead of the transplant. We knew if she had a transplant, that it would not last and she would be on the anti rejection drugs for life. She is now 16 and we go for an echo once a year.

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