Greta was 8 months old when we got the call—they had found a heart for her. First it was a feeling of disbelief. Then reality hit. Our child had to have a transplant surgery that we really didn't know too much about. My husband and I had heard about organ donation (we had always checked that box at the Division of Motor Vehicles to be organ donors), but we realized that we knew very little about organ transplants and what was involved.
The surgeon explained that the surgery itself is actually one of the more straightforward surgeries to perform and was less complex than other heart procedures. That was a little reassuring, but at the same time, our child’s life was going to be in the hands of people who were going to take her heart out and put in a new one. It was honestly so scary.
I also remember thinking that, because the heart had to be about the same size as Greta’s, it had to have been from a young child. I thought about the family of that child and knew that this was a very sad time for them.
What Greta knows about her transplant
Greta is a sweet, vibrant girl who easily connects with people, and who loves gymnastics, the Girl Scouts, and the NY Yankees. Her transplant is part of who she is, but looking at her, you’d never know she had a heart transplant, except of course for the scar on her chest. But she hasn't been very self-conscious about the scar at all. In fact, she talks about it openly.
Greta understands the basics about her heart transplant. She doesn't know the ins and outs of the surgery, but she's seen pictures of herself before the surgery and knows that her own heart was not working well and that she was very sick.
And now at 10 years old, Greta asks a lot of questions about her transplant. So do her brothers—one a twin and the other a 12-year-old. We answer their questions as honestly as we can and in language they can understand. And if Greta has questions for her doctors, I let her ask them. It’s important because she’s going to have to be responsible for herself one day. Greta even sets an alarm on her tablet that lets her know when it’s time to take her medicines. She also understands the importance of keeping her heart as healthy as possible.
Advice for others
When I talk with other parents who are in a similar situation, I tell them about some of the things that helped me and my husband. For one, I kept a journal. It can be helpful to write down what you’re feeling and thinking throughout the transplant process so as to not keep things bottled up inside. And now I can share it with Greta.
It’s also good to have a way to communicate information to family and friends. Many people may be concerned or want updates or want to help, but they won’t know what kind of support you need or how to provide it. Talk with your family and friends—the people who make up your support network—and designate someone to be the point of contact. They can help communicate to others what you need and what you don’t. It may be helpful for you and can also let your support network feel like they’ve helped in some way, no matter how big or small.
I also recommend talking with others who have gone through something similar. Though each transplant case is unique, it can help you know what to expect. Doctors and healthcare professionals can tell you what might happen, but being a patient or caregiver is very different. It was a huge help for me and my husband to speak to another parent going through the same thing. This can also be helpful after the actual transplant—we got a lot of good advice on what to do for the road ahead.
Celebrating life and giving back
Every year for the past 6 years, our entire family (aka Team Greta) participates in the NJ Sharing Network’s annual 5K. We walk (sometimes run!) to help raise money and awareness for organ and tissue donation. It’s also a great way to see and meet other volunteers, organ recipients, and donor families all coming together. Greta especially looks forward to this every year.
It’s hard to believe that nearly 10 years have passed since Greta received her “special” heart—and all because of one family who made the decision to turn their sadness into a gift of life.
Michelle Clausen, PharmD, is a pharmacist, Senior Director of External Medical Communications Strategy and Innovation at Pfizer, and mom to Greta.