It wasn’t long after Lauren Aggen’s birth that doctors realized something was wrong. Aggen was diagnosed with a rare congenital heart defect known as hypoplastic left heart syndrome (HLHS), in which underdevelopment of the left side of the heart leaves the aorta and left ventricle too small to allow for sufficient blood flow throughout the body. Aggen’s chances for survival were ruled slim without the aid of a heart transplant. At only eight days old, she became one of only a few children in Chicago who received heart transplants that year.
Today, at age 21, Lauren has defied daunting odds and has learned to navigate the challenges and responsibilities associated with being a heart transplant recipient. As she approaches completion of her college studies at the National Technical Institute for the Deaf at Rochester Institute of Technology (RIT), Lauren has written a book through which to educate others and to express her gratitude to her donor’s family.
During a phone interview with ABILITY’s Chet Cooper and cardiovascular surgeon Dr. Moses DeGraft-Johnson, Lauren Aggen was joined by her mother, Janet, to discuss their courageous journey through hope and uncertainty.
Chet Cooper: Congratulations on your book and on being so close to finishing college! How did you choose RIT as the place you wanted to study?
Lauren Aggen: I had entered a writing contest while I was sick in the hospital, and I ended up winning it. The prize was to go visit RIT and take some classes and just get a feel for it. The school provides services for the hard-of-hearing and the deaf—interpreting services, closed captioning, that sort of thing—but at the same time, you can go into a mainstream classroom. That’s what I was looking for, and I really felt comfortable there. It was fun.
Cooper: What grade were you in at the time of this visit?
Lauren: I was in my senior year of high school.
Cooper: What was your award-winning story about?
Lauren: Well, I had to write about being an advocate for myself. It was for a program called Explore Your Future, EYF, and the contest I won was called The Spirit Contest.
Cooper: What are you majoring in now?
Lauren: Applied liberal arts. I’ll graduate this May, and then I’ll transfer for a bachelor’s in either education or cultural multidiscipline.
Cooper: Can you explain what your applied liberal arts program focuses on?
Lauren: It’s pretty much a general major, because I don’t have one particular interest. A lot of things grab my attention, so I could do a little bit of psychology, public relations, communications, and graphic design. I really enjoy talking to a big crowd. But I also like working with kids, and that’s where my interest for education comes in.
Cooper: Is RIT a four-year college?
Lauren: Yes, but the program I decided to go into is two years, plus another two as an option. Because of my health concerns, I didn’t really want to go through school for four straight years, just in case I got really sick or something. So I thought if I did a two-year program and became sick, I could go home and still have a degree.
Dr. Moses DeGraft-Johnson: I think it’s great that you’re trying to accomplish so much. It sounds like you’re making the most of life.
Lauren: Thanks! I don’t remember any of the transplant process, since I was just a baby, but I’ve learned to be grateful for it. My heart came from a baby boy in Austin, Texas who died of sudden infant death syndrome.
Cooper: You have a boy’s heart?
Lauren: Yes, I do! And I don’t mind! It’s okay. (laughs)
Cooper: Are you a bit of a tomboy because of that?
Lauren: (laughs) No, I’m definitely not a tomboy. I enjoy going on adventures, but I’m definitely a girly girl. But some of the toxic medication that was used while I was waiting for a new heart caused me to lose my hearing, so I am profoundly deaf.
Cooper: Do you have a cochlear implant?
Lauren: No, I have a hearing aid, and that’s fine. I am going to speech therapy, because for my speaking career, it’s important that people understand me better. My mom is also a speech therapist, so she influenced me, growing up.
DeGraft-Johnson: Janet, can you tell us a little, from your perspective, about all that went on with Lauren’s heart?
Janet Aggen: Sure. I had delivered Lauren at about two in the morning, and she was taken to the children’s hospital in the city. I was still over in Barrington, about an hour outside of Chicago. The children’s hospital called and told me that Lauren’s heart was not compatible with life: she was going to die.
So when we drove into the city, we didn’t know a heart transplant was even an option. We just thought we were going to be with our baby as she died.
Once we got to the hospital, the medical team met us, our minister was with us, and each member of the team told the results of the evaluations. Each one was bleak. There was no hope, there was nothing, and the very last doctor said, “We have begun an infant transplant program, but the waiting time is generally in the thirty-day range, and this baby only has three days. We could list her, but the possibility of getting a donor in that time is really slim.”
DeGraft-Johnson: What was going through your mind?
Janet: I was in shock. We didn’t know what this meant, in terms of her future. We didn’t know if her life would be limited because of this health condition. It was a total unknown. You wonder, “Is this transplant an experiment? Is this really going to save my child’s life?” You feel so many emotions, and most of all, you don’t want somebody else’s kid to die, even if that saves your own.
Lauren was listed for a transplant, and it was the coldest day: it was 21 degrees below zero when we made this trip from Barrington to Chicago. I got pneumonia. So then I found myself in a situation in which I couldn’t go in to see the baby, because I didn’t want to take any germs into Neonatal Intensive Care Unit. So for two days I couldn’t be with her. Doctors put her into a coma to try and conserve everything they could. All of her hair had been shaved so doctors could put tubes into her. We thought, “Is this really our baby?”
It was such a roller coaster of ups and downs. I’d have a little bit of hope and then it would be taken away. Lauren was deteriorating, and the doctors consulted with us, saying they were going to have to take her off the transplant list in the morning. She was too far gone to survive the surgery.
DeGraft-Johnson: You were probably exhausted,
Janet: Yes. Then the nurse came in and said, “I can’t really tell you this yet, but we just got a call. There is a possible donor, but we don’t know if it’s a match.”
This began another set of highs and lows for us. We knew we’d need blood if this operation were going to occur. We needed A-positive blood, and it was New Year’s Eve, and a lot of people happened to be out partying at the time. We had to call around to everyone we could think of and say, “Could you come in and get tested to see if you could be a donor?”
It was a difficult process. Once everything was in place—the heart checked out, things looked well—we learned the team transporting the transplant couldn’t land in Chicago. There was an ice storm and O’Hare airport had been closed. The heart was diverted to Milwaukee, and the doctor called and said, “I’ve got the heart and I don’t know how to get it to you in the timeframe.”
I said, “Can you check and see if there’s a baby in Milwaukee who can use it?” because you don’t want the heart to go to waste. Fortunately, a pilot walking by the doctor saw the cooler and heard the conversation and offered the use of his helicopter to take the organ to the hospital.
When the heart came, we could hear the helicopter blades. But we were afraid to get too excited. Too many things had gone wrong. Nevertheless, it was all looking much better once the helicopter got there.
DeGraft-Johnson: You mentioned earlier that your minister was with you for some of this. How did this experience influence your faith?
Janet: At some point early in the ordeal I realized I could never pray for a donor. I didn’t want someone else’s baby to die. Instead I just asked God to “Walk me through this. Get me through this.” That’s pretty much how I looked at it. His plan was made, and I was just part of it.
DeGraft-Johnson: So the doctors finished the operation, and Lauren’s new heart spontaneously started working. At some point, I’m sure you’re thinking, what is life going to be after this?
Janet: Right. I’ll tell you this: when the surgeon finally came out and said, “Everything is good, but now we have to wait for rejection,” it was like, “Another thing? Rejection?” That was obviously the big word in the life of a transplant, and we just weren’t prepared for it.
Also, there was nobody I could go to and ask, “What did you do?” The oldest living baby transplant was four months old. So we began on yet another journey. You have to learn to live with it. If you get a new heart, your body is never going to forget it’s not your organ. This transplant is a lifelong commitment. So we knew this was going to be what our existence would entail. You’re trading certain death for a lifelong disease.
DeGraft-Johnson: How long did Lauren stay in the hospital after the transplant?
Janet: We were out in about a month, which was the soonest they had sent anyone home.
DeGraft-Johnson: So during that first year of her life, you knew you were not out of the woods?
Janet: Absolutely. I have another child who’s older than Lauren, but with Lauren we had to ask ourselves if her behavior was “normal baby stuff” or “transplant stuff.” And it was sometimes tricky to determine. But the people at Children’s Memorial were very patient in helping us figure it out.
DeGraft-Johnson: From a medical perspective, even if a heart transplant recipient has a common cold, we have to assume the symptoms are transplant-related until proven otherwise. We have to rule it out.
Janet: Right. So many things don’t react normally, in a transplant recipient. That’s been the real learning curve. We even told our family, “If you’re sick, we don’t want to see you, and we don’t want to come to your house.” It’s just not worth the risk.
Lauren’s older brother was seven at the time, and I had to worry if somebody in his class had chicken pox. I had to worry if he might come down with something. The school nurse and I were very good friends. That communication was really helpful.
We sent a letter home to the parents of the students in her class: “If your kid gets chicken pox, please call us any time, at home, at night, whatever. We have to get her a shot within 24 hours.” And everyone was responsive to that. They were really good about it.
DeGraft-Johnson: How did you feel once Lauren prepared to go away to college?
Janet: I felt very confident the doctors were going to take good care of her. We got an internist, got all her specialists lined up, visited them all. Living in the dorm was a concern, but we were able to get her a single room with her own bathroom. And she missed less school her freshman year than she missed every other year. But she had a good, healthy year last year.
Cooper: What’s your health like now, Lauren? How are you feeling?
Lauren: I feel very fortunate that my heart is a good match. My kidneys are 40 percent damaged, due to the anti-rejection drug, but considering that I’ve taken medication that has hurt my kidneys for 20 years, 40 percent damage is pretty good. And I take 32 pills every day.
Cooper: Throughout the day? At different stages?
Lauren: 10 o’clock, 11 o’clock, 10 o’clock, 11 o’clock.
Cooper: What are the pills for?
Lauren: I take anti-rejection drugs, so my body is fooled into thinking that my heart is actually my heart. And I have to take a lot of vitamins and blood pressure medication. I also have to take pills to protect my kidneys. It’s all kinds of good stuff. (laughs)
I take them and then I go on with life. I’m very busy every day. I have classes, I work, and then I have rehearsals for a show with the RIT dance company. We do ballet, tap and jazz. We also do plays, so I act. I’m always cast as the little kid, but I don’t mind.
We did a production of Little Women, and I played the youngest, Amy March. That was my favorite role that I’ve ever done.
Cooper: And you do some public speaking, too, right? How did you get those opportunities?
Lauren: Well, in high school, I was in a club called Project: Admission, where we taught students about the dangers of drinking and driving. I joined the club and incorporated the topic of organ donations, and then, with the help of certain teachers, I was connected with a team called Donate Life. I’d go into drivers’ education classes and tell kids my story. I’d tell them about how organ donation has influenced me, and I’d tell them I hope they each consider being an organ or tissue donor.
I am now volunteering at Friends of Strong, which is an organization set up at the hospital five minutes away from my dorm. For that program...continued in ABILITY Magazine
Excerpts from the Kathy Ireland Issue Feb/Mar 2011:
Kathy Ireland — Interview
Blind Fishing Boat — New Fishermen Take the Bait
Yahoo — Expanding the Digital Highway
Heart Transplant — An Uncommon Cardiac Connection
Sean Forbes — Not Hard To Hear
ABILITY Best Practices Award — Sprint
Gunshot Wounds — Bullet Points
Articles in the Kathy Ireland Issue; Humor — Love Hurts; Ashley’s Column — Back in the Saddle; Sean Forbes— Not Hard To Hear; Gunshot Wounds — Bullet Points; ABILITY Best Practices Award — Sprint; Blind Fishing Boat — New Fishermen Take the Bait; Yahoo — Expanding the Digital Highway; Rehabilitation — Hitting New Strides; Terri Cheney — A Plea for Innocence, growing up Bi-Polar; Kathy Ireland — A Model Businesswoman; Heart Transplant — An Uncommon Cardiac Connection; Leigh Brill — Excerpt From A Dog Named Slugger; ABILITY's Crossword Puzzle; Events and Conferences... subscribe