Erica Coleman was born in 1979 with a hole about the size of a dime in her heart. The opening got smaller but failed to close as expected, which eight years later con fronted Erica’s mother, Denise Horn, with a frightening necessity: Her only child had to undergo open-heart surgery and then, four months later, a heart transplant. In 1988 such transplants were performed on about 120 children.
Though Erica, whose mother is single and whose father left before her birth, had seemed a happy, normal, active child, her health suddenly worsened when she was 8. After Erica’s open-heart surgery in March 1988, Denise, now 35, quit her job as an airline sales agent to care for her daughter full-time. Since then she has received federal and state aid for support and medical bills. Today Erica is a warm, sunny fourth grader. She jogs, shoots down playground slides with the best of them and has written, through the hospital, to thank the parents of the unknown teenager whose heart now beats for her. And, vowing to become a doctor, she practices “transplants” on her teddy bear. Each day, however, carries risk. Doctors examine her heart tissue in periodic biopsies, and on the first anniversary of the transplant, Erica suffered a severe heart rejection, which was successfully treated. She will be under medical supervision all her life, but her transplant surgeon thinks her prognosis is good. Denise and Erica, who live in a two-bedroom Los Angeles home, talked with correspondent Suzanne Adelson about their ordeals.
Denise: When Erica was presented to me after birth, I was told I had a very healthy baby girl. It wasn’t until her six-week checkup that I became aware of her heart defect. They put her on medication to strengthen the heart muscle, and I was told eventually they would probably go in and do open-heart surgery. But when she got closer to school age, the doctors said she was doing so well they would just continue to watch her.
Then one night in March 1988, I heard her groaning, and she said her stomach was hurting her really badly. I took her to Harbor-UCLA Medical Center, and I was told they had to do open-heart surgery. I was totally devastated because I had thought I was taking my daughter to the emergency room for the flu. But she came home in 3½ weeks, and she soon became her old self again.
Then in July, Erica began complaining that her back hurt her. And when I tried to cuddle her, she said, “Mommy, Mommy, I can’t breathe.” I knew that meant getting her to the emergency room immediately. I grabbed a list of all her medications, a list of everything she had gone through in March. My mind was spinning. I thought, how could this be? She just had open-heart surgery. They closed the hole and put in a new valve. What is there left for them to do for her? I was nearly out of my mind.
A lot of tests were done. I finally was told that, because her heart had been so damaged before the surgery and she was on so much medication already, the only thing left to do was a heart transplant. I kept thinking, it’s got to be a mistake. It can’t be my Erica they’re talking about. All sorts of things started rushing through my mind, because I’d had this little girl for 8½ years, and she’s my life.
I was told Erica would have a great deal of input in the decision. If she had to undergo a transplant, more needles, more this and that, and she said that she couldn’t deal with that anymore, there would be a greater chance of her body rejecting the heart. And about that time, Erica said, “Mommy, I love my doctors and nurses, but I hate the hospital. I am tired of being punctured. I want to go home.”
I was feeling very, very ill when I left a meeting with the surgeons that afternoon. I had to sit down out front so I could catch my breath. I couldn’t believe my daughter was going to have to endure this—the surgery, the side effects of the medication. I remember praying, God, please help me with this, because I have never had a person’s life put in my hands.
I stayed in the cafeteria and cried most of the night, then came back by her bedside. She awoke at 7 A.M. and said, “I need to talk to you.” I said, “Sweetheart, it’s only 7. Can’t it wait?” She said, “Mommy, have you been crying?” I said, “No, why would you say that?” She said, “You have never lied to me. Would you do me a favor? Don’t start now. Why didn’t you tell me I might have to have a transplant? One of the doctors told me while you were gone.”
Then she said, “If I don’t have it, what will happen? Be honest with me.” And I was. I told her that without the transplant, eventually I would lose her. Erica said, “Mommy, then we have to do it.”
Two days later the call came through that there was a heart. I just collapsed emotionally. I hadn’t known if it would be three months, six months or what.
Erica: My mom called and said, “Erica, UCLA Medical Center is sending a helicopter to pick you up and take you there, because they have a heart waiting for you.” My mom started crying, and I started crying. I was very happy, because it’s not an everyday thing when you get a new heart. At first I was more worried about the helicopter ride than the surgery, but once I got on the helicopter, it was fun. My thoughts were like, wow, me having a heart from a different person. I was scared, but I wanted to be alive and with my mom. I just wanted to be a child. A kid doesn’t need to suffer or have some sort of disease. Kids need to be kids when it’s their time. I wondered if I would feel like the same person when I woke up, but after it was over I still felt like the same person. I had a heart, and that’s all that counted. But I was sad for the teenager’s family who had given me this chance to live.
Denise: Erica was flown to UCLA on July 28, and that night they prepared her for surgery. Friends were there, and others were calling, telling Erica she was loved. I sang our favorite song to her, “You Light Up My Life,” and told her, “I love you very much.” We have this thing we do to each other, thumbs up, meaning we’ll be together forever and ever, and we did thumbs up to each other.
The surgery lasted all night. It was the longest night of my life. I felt as if I couldn’t breathe at one point, and my best girlfriend walked around outside the hospital with me to comfort me. The minutes were ticking by. I kept going up to Erica’s room and coming back down and going up to her room and coming back down. It was around 6 A.M. when they finally took her to the recovery room. I sang our song to her again, told her I loved her and was so proud of her, that she was a very strong little girl. I told her they wouldn’t let me stay long, and immediately she crunched my hand and started shaking. I started getting paranoid that something was happening to her. Then finally she moved a thumb. I said, “Erica, are you trying to tell me thumbs up? Squeeze my hand if you are.” She squeezed my hand. She was trying to tell me, “Mommy, we made it.”
For a short time after the operation, she wasn’t like the little girl I knew. Normally she is so sweet and loving and open, but she became very quiet and wanted to be by herself. She would say, “Mother, I just don’t feel like talking.” And I would think, Mother! We’re getting pretty formal here. Her change had something to do with accepting the new heart and all of these new medications. Everything was foreign to her body, and she was in a lot of pain. For a couple of days it was like she had lost her memory. She couldn’t remember what day it was or where she was or how long she had been there. She was also dropping things. She couldn’t hold her fork or her spoon. She couldn’t walk. She had always been so independent, so for her to feel out of control, that just freaked her out. But sure enough, she came out of it. She was discharged after 10 days.
Erica: I saw pieces of my new heart after my first biopsy. They put pieces of it in a little container of alcohol. I was awake all that time, and after they were finished I said, “Can I see my new heart, please?” The doctor said, “Okay, but if you get sick, I told you so.” I held the bottle, and there were these little bitty pieces of my heart. They were so pink and beautiful.
Denise: Erica and I take nothing for granted anymore. You think about all those little things you never thought about before, like when you wake up in the morning and are able to see and breathe. It’s like, thank you, dear Lord. As for the donor family, there just aren’t enough words to express my love and gratitude.
Erica: Now that I have my heart, it feels just like my real one, and I can do the things I used to do before I got sick. I can do my cartwheels and dance and jump rope. And now I can grow up to be a doctor, like I’ve always wanted to be.