Every morning for 10 years, Joan Smith paused outside her daughter Leah’s door before going inside to wake her.
At the threshold, her fingers on the doorknob, she would listen. If she heard rustling blankets or Leah murmuring, she would relax and walk in.
But if there was silence, she would close her eyes, take a deep breath and prepare to find her daughter dead in her sleep.
Leah was born with hypoplastic left heart syndrome, which means the left side of the heart is underdeveloped. She received a heart transplant at 11 days old. Doctors told her parents Leah may live up to 10 years with the new heart.
“When she had her 10th birthday, it was like all of that was lifted,” Joan said. “It was like ‘she’s beat the odds!’ and the burden was lifted. I didn’t sleep those first 10 years, but then I could sleep.”
It’s been almost 12 years since Leah passed her heart’s 10-year expiration date. In three weeks, Leah will be 22.
This birthday, however, will be different. It will be a celebration of life and, yes, of beating the odds. But this birthday, there’s only one thing on Leah’s wish list.
She needs a new heart.
The impossible chest pains
On March 6, Leah moved slowly but surely through the sterile white hallway at Methodist Hospital in Indianapolis. She had obviously made herself at home on the seventh floor – the organ transplant floor.
“We can sit in here,” she said, opening the door to a sunroom full of chairs. “I like coming in here. It’s nice to get away from the room.”
She plopped down on a sofa, adjusted the big metal beeper attached to her hip and pulled off her yellow facemask.
Then she leaned back and began her story.
“I got to do a lot of cool things because of my transplant,” she said. “Until now, it had never been a bad thing.”
That all changed at the end of the spring 2012 semester, she said. Leah, who is a senior broadcasting major, began experiencing chest pains, and by July, the pain was constant and severe.
Leah saw her family doctor, who told her it was impossible that the pain was related to her heart since they cut the neural connections to her heart during her first transplant.
“They kept saying ‘It’s not pain in your heart, you can’t feel pain in your heart,’” Leah said.
According to the Stanford Heart Transplant website, this is called denervation. “The incisions in heart [transplants] … sever the sympathetic and parasympathetic nerves … another effect of denervation is that you may not perceive chest pain.”
Joan said that the doctors suggested a number of diagnoses unrelated to the heart, but no treatment fixed Leah’s chest pain. She began to lack energy and said she slept “all the time” and struggled to exercise.
Leah chose to commute instead of live on campus for the fall 2012 semester because of her chest pain and lack of energy.
“When I started commuting in the fall, I couldn’t even make it to class and back home without immediately needing to go to bed,” she said.
During the last week of classes in December 2012, Leah suffered a heart attack.
“It was a different kind of pain than the regular chest pains,” she said, “kind of a higher-up sort of pain.”
Leah went to the emergency room at Lutheran Hospital in Fort Wayne and was then rushed to Riley Hospital for Children in Indianapolis. There, the doctors performed an echocardiogram and a catheterization, Creager Smith, Leah’s father, said.
“The catheterization found that her small blood vessels of her heart were becoming blocked,” he said.
The doctors said that Leah’s heart was in diastolic heart failure, which means it was not contracting to propel blood out to the body, Creager said.
“At the point it pumped just fine, it just couldn’t relax,” Leah said.
Doctors told Leah she was going to need another heart transplant.
“The more devastating news to me at that point was that I would have to leave Riley and come here to Methodist Hospital for care,” Leah said, “For me, I was like ‘I can do another transplant’ but they made me leave Riley!”
Leah said she was very emotionally attached to Riley because she had her first heart transplant there and has had many of the same doctors her entire life. Riley can only take calls for hearts for patients under 18, however, so Leah had to switch hospitals.
She visited Methodist Hospital about every other week during January and February as she waited for the transplant. Doctors also told Leah that to be eligible for the heart transplant list, her Body Mass Index (BMI) needed to decrease. She began dieting to try to lose weight for the transplant.
Leah continued to try to live life normally, despite the fact that she was still lacking energy. She enrolled in classes this semester, hoping to still graduate this May.
Things took a turn for the worse on Feb. 26. Leah suffered a second and more pronounced heart attack, Creager said.
“I woke up in the middle of the night in just horrible pain,” she said, “Back pain, neck pain, cold sweats. I googled symptoms of ‘woman heart attack’ and they were all listed. I knew I was having another heart attack.”
Leah tried to self-medicate with nitroglycerin tablets, which are used to treat chest pain, but around 5 a.m., Feb. 27, she knew she had to go to the emergency room.
At the Lutheran Hospital emergency room, doctors tested Leah’s blood for troponin, a blood protein indicator that reveals the heart’s level of distress. A normal troponin level, according to the American Heart Association (AHA), is between 0 and 0.5. Leah’s troponin level after her first heart attack had been 7.5. After her second heart attack, it was 13.
Leah was transported by ambulance to Methodist Hospital and admitted into an intensive care room. Doctors performed another catheterization and found that in the two months since her last heart attack, her heart had deteriorated much faster than anticipated, Creager said.
“The diagnosis now is just heart failure, both diastolic and systolic,” he said. “It’s having trouble pumping. It’s having trouble relaxing because of the progression of the deterioration of the vessels.”
One of the most difficult things for the cardiologists to grasp is that Leah actually experienced chest pain related to her heart because the denervation should have made it impossible, Creager said.
Joan said the chest pain was a blessing because it gave them a warning that Leah’s heart was failing.
“Other transplant patients are just going along and pass away, because there’s no pain that warns them something’s happening,” she said, “That’s what we expected. God decided that he was going to give her a wakeup call.”
On March 4, several doctors, including the doctor who performed Leah’s original heart transplant – Dr. John Brown of Riley Hospital for Children – met to discuss Leah’s options.
One option was taking out Leah’s heart and using an artificial heart, but Leah’s bone structure was determined to be too small for it.
They also considered using a left ventricular assist device (LVAD) or left and right ventricular assist device (Bi-VAD).
According to the National Heart, Lung and Blood Institute’s website, a VAD is “a mechanical pump that’s used to support heart function and blood flow in people who have weakened hearts … the device takes blood from a lower chamber of the heart and helps it pump it to the body.”
However, doctors determined that Leah would only be able to live for six months at most on a VAD.
Leah is still ineligible to be listed for a heart transplant because of her weight. Joan said she needs to lose about 20 pounds to lower her BMI enough to be on the list.
If she were listed, there would still be challenges to find a heart match because Leah has a high number of antigens. Antigens are substances that provoke antibodies. This is a problem, Leah said, because if she received a heart that had fewer antigens than her body, her immune system would attack the new heart.
Another option is a process that would remove the excess antigens from her blood, making more hearts a match for her.
“There’s a treatment, it’s called desensitization,” Leah said. “It would basically clean my blood and put the red blood cells back in without the antibodies.”
Leah cannot start desensitization until she loses the weight, however.
The biggest problem, Joan explained, is time. There is no way to gauge how long her heart – or “Jimmy’s heart” as Leah calls it, named after her first donor – will last. Based on how rapidly her heart deteriorated from the first heart attack to second heart attack, it may not last long.
After discussing the options, doctors gave Leah the option to go home or remain in the hospital.
“They basically said, ‘You can die here or you can die there,’” Joan said, “No matter how many times they tell us there’s nothing they can do, we’re convinced that they’re wrong because God has worked miracles with her her whole life – he put her nerves back together.”
Leah explained that she wanted to stay in the hospital because she is still hopeful her heart will last long enough for her to lose enough weight to be eligible for the transplant list and either go through desensitization or be matched with a heart that has her antigens.
“I’ve decided I believe God will carry Jimmy’s heart as long as I need it to get a transplant,” Leah said, “I like to believe he will take care of the antigen thing too. There is a chance there could be a match out there that would match all my antibodies.”
Leah said she is confident that no matter the outcome, God has a plan.
“Whether it is through my life or through my death, I just want all of this to glorify God,” she said.
Friends when it counts
Leah’s best friend, Whitney Abbott, a 2009 HU alumna, was curled up next to Leah the entire interview. A few times, she interrupted to correct a point or remind Leah of a part of her story.
“Whitney is my flash drive,” Leah said with a laugh, comparing her own brain to a computer.
Whitney and Leah met around seven years ago through a ballroom dance class. Leah said she has always loved to dance and ice skate.
The two were planning on going on a cruise before Leah’s first heart attack.
Leah said that if she gets her heart transplant, she plans to go clothes shopping and then go on that cruise because “by then, I will be so skinny!”
Whitney bemoaned the strict diet Leah is on to lose weight for the transplant.
“She’s only eating 900 calories a day,” she said, “Do you realize how little 900 calories a day is? A day!”
Leah does have one food exception planned: birthday cake.
Both young women have been busy planning Leah’s 22nd birthday, which she will celebrate at the hospital.
“I want to have it in here,” Leah said as she looked around the big, glass room. “There’s another transplant family, and one of them is a caterer. She has offered to cater my birthday party.”
Leah said that she hopes to walk at graduation in May. She will still be a few credits short of her broadcasting degree, but she is close enough to the requirements to walk.
“It would be really nice to graduate with my class,” she said.
Leah emphasized that if she could communicate one message to HU students, it would be to never take their health for granted and to value it.
“You never know what could happen,” she said, “I just want to encourage healthy eating and exercise, because you never know when you’re going to need an emergency surgery, and you may not make it because you’re overweight.”
Whitney chimed in, “And also to be an organ donor!”
Leah laughed, “Yes!”
Whitney said Leah’s first heart attack terrified her, because it was the first time the reality of her condition hit her.
“I haven’t know her since I was little baby, so it hasn’t been engrained in me she could be gone at any time,” she said.
However, Whitney said they have both found a sense of peace about Leah’s situation.
“If God chooses to keep her with us, that’s what I want,” Whitney said. “But if he chooses to take her home, I’m going to trust him that it’s for the best.”
Whitney explained that she had seen Leah’s faith grow tremendously during the last summer and fall. She believes this was God preparing her for what was about to happen.
“There’s this house church that started in downtown Fort Wayne,” Whitney said. “Leah has come, and I feel like since then her faith has grown a lot stronger.”
Leah said that her confirmation verse has been a stronghold in her life. It is Psalm 28:7, “The Lord is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.”
She explained that she has suffered with depression in the past, stemming partially from seeing other transplant patients she grew up with die.
“My fear was this happening to me,” she said, “But since we started the house church, I’ve just become so strong in my relationship with God and am at peace. Whether I live or die, I’ll be happy. If I die, I’ll be in heaven. If I live, I’ll be with Whitney on a cruise.”
Faith breeds hope
Leah was worn out from the interview and retreated back to her room with Whitney. Joan stood up and moved to sit next to Creager on the couch.
They explained that Leah’s older sister Kathleen is taking care of things in Fort Wayne while they stay at the hospital. No matter what, Joan said, they always do things as a team in their family.
“It’s the four of us or bust,” she said. “That’s how it’s always been. Whatever we do, we do together.”
Joan and Creager agreed that God is what has gotten their family through the long journey and advised parents to encourage their children in their faith above all else.
“The foundation of loving God,” she said, “that little mustard seed is going to be there when your child needs it. That’s what we’ve learned in all of this. Our only role as parents is to create that foundation of faith.”
Joan looked sideways at Creager and asked if he had anything to add. He smiled.
“I think that’s pretty good.”
They walked back to Leah’s room, which was recognizable from a mile away because of the bright-colored signs plastered all over it, proclaiming “Leah Evangeline Smith,”
“Team Leah” and “The Party Starts Here.”
Inside, Joan went through her bags from Wal-Mart to show Leah what she bought that day. She held up a bright purple T-shirt with butterflies and several bottles of nail polish. Leah clapped and laughed.
The atmosphere was light, loving and content.
The girl who sat in the bed in the middle of the room is not a dying girl.
She is a laughing, ice-skating, smiling, shining, dancing, fighting, wonder girl.
On March 15, Leah passed out while walking in the hospital.
“I was out for three or so minutes and had a heart rate of only 30,” Leah wrote on the Team Leah Facebook page. “So I wasn’t getting enough oxygen to my brain. I finally woke up when they had me back on my bed and were giving me oxygen.”
Leah was moved to a cardiac critical care unit shortly after.
Leah plans to celebrate her 22nd birthday on March 30 in the hospital’s solarium. A friend will cater it for her. She plans to have one food splurge.
“Birthday cake,” she said, “with tons of frosting.”