Giacinta Pace
Heather Thomson, left, with Aldara Lester modeling the Yummie Tummie “Life Tank,” the proceeds from which will go to organ donation advocacy.
By
NBC News
updated 6/10/2009 11:42:40 AM ET 2009-06-10T15:42:40

Cause Celeb highlights a celebrity’s work on behalf of a specific cause. This week, we speak with fashion designer and celebrity stylist Heather Thomson about her work on organ donation advocacy with the New York Organ Donor Network. Through her ready-to wear women's tank-top line Yummie Tummie, Thomson is raising money to spread awareness of the importance of organ donation. Thomson is the creative force behind P. Diddy’s Sean John line, as well as several labels launched by Beyoncé Knowles and Jennifer Lopez’s Sweetface brand.

Question: Can you tell me about your organ donation advocacy?

Thomson: Organ donation is all about awareness. A lot of people sign the back of their (driver's) license, and they’re like, “Oh yeah, I’m an organ donor”, and it’ just not enough, unfortunately. Because sometimes we’re stuck in these terrible tragic situations, and we’re not here to speak for ourselves, and our family members have to speak for us and they may not be aware of our wishes. It’s a very difficult time, and someone has to come and say, “Would you like to donate your mother, your daughter, or your son’s organs?” And you’re so distraught, you’re like, “No I …” You haven’t even come to terms with what’s happened. In a terrible time like that, to make a decision like that, it should be just pre-thought out and preconceived really.

There are certain ways you can do that and your license isn’t always with you. When things happen, people aren’t like, “Turn over her license and see if she wants to donate her organs.” So there are ways you could go on (the Internet to find) your organ donor network, or go on to Google and search organ donations. There are forms that you can fill out so that you are registered on a national registry, so that doctors and hospitals know that it was a choice of yours.

The other thing to do (is) download a living will from any Internet site. You don’t have to go to a lawyer and write this big living will. But, if you want to be an organ donor, sign the back of your license, sign up on the registry, provide insurance for yourself, speak to your family members. Let them know, “You know mom, hey listen, if anything should ever happen to me, I do want to be an organ donor. It’s important to me.” So that she knows, because then they’re going to carry through your wishes in your death.

Q: Can a family member override your wishes?

Thomson: Yes, if you have not registered and you don’t have a living will. If you just sign the back of your license, a family member can override that.

Q: But, if you’ve done the registry, or have a living will, then your wishes will be …

Thomson: Yes, your wishes will be fulfilled.

Q: How long have you been advocating for organ donation, and how did you become involved?

Thomson: In 2004, my son had a liver transplant at 6 months old, and from that moment on I became very aware of organ donation. I was always an organ donor from the time I got my license at age 16. I signed the back of it, and thought, well jeez, if I don’t need my organs, I certainly want to give them to someone who may, and that’s just how I felt about it. Then, I came into this situation where I was reliant on a donor to save my child’s life, and boy, did that really make me understand it a lot quicker and a lot more.

Seventeen people a day die waiting for an organ. There are hundreds of people that are buried every day with them [organs]. My son had a liver issue and needed a liver, and you can actually be a living donor with a liver. I went through a liver biopsy. I was trying to be a living donor, because Jax was high on the donor list, but he was sick, he was dying in front of us. He was getting sicker and sicker and sicker every day, and we were holding on to this hope.

Now if it was a heart he needed, I wouldn’t have had a shot, I’d just have had to sit there and wait. But I went and got tested to see if I could donate a piece of my liver, and I was a match. My problem was my genetic makeup. So you have two lobes to your liver, a left lobe, and a right lobe. The left lobe is smaller, so when a person dies and they donate their liver, usually the smaller lobe goes to an infant and the larger size goes to an adult. The liver is the only organ in the body that regenerates. So, if I were to give you a piece of my liver, the other side of the liver would grow bigger to make up for the piece that was gone. When you actually implant a liver into a child or an adult, it will grow to the size it needs to grow to process all the things that a liver processes.

So, if we were to have transplanted my liver into Jax, my son, he would have to remain open after surgery, because the liver was too big to close around him, and he could have gotten an infection, and would be susceptible to a lot of stuff. Thank God that on the unfortunate death of a young man named Donald Blair here in New York City — he was visiting New York. He had lived in New York, and he had just left New York and he was visiting and he was on a bicycle and he got in an accident. In his death, he saved my son’s life, and he touched the life of 50 other people. His heart went to a lawyer here in New York City; his pancreas went to a woman and a mother of two who needed a pancreas; his skin, his tissues, his eyes … so someone sees now because of him. So in his death, it’s great because it’s really an amazing, an amazing thing. It’s the biggest gift you can ever give.

Q: Did you have a chance to meet his family?

Thomson: I have never met them, but we have written letters to each other.

Q: Did they give you the information about the donor when this happened?

Thomson: What happens is it’s all very private. The donor list does not see race, color, creed, cash, celebrity. The donor list only sees how sick a patient is. So when you’re on a national registry for a donor list, you rise to the top based on your need. My son was at the top of the list. He was an infant and he was going to die if he didn’t have a liver. Donald was killed here in New York City, and Jax got a piece of his liver as did others. So, you don’t know anything, it’s all totally anonymous.

After my son came out of surgery and we knew that he was OK, the first thing my husband and I did was we went home and we wrote the most difficult letter we’ve ever written in our lives. It started, “Dear Family,” because we had no idea who they were, and we told them how grateful we were about this gift. About four months later we got a letter back. In that time I had then contacted the New York Organ Donor Network. Elaine Berg, who is the president of the New York Chapter, was the first person I called when I got the letter. I was like, “Elaine I got a letter from the family.” When I read the letter she knew the donor family, because, in a bittersweet irony, Donald Blair’s parents both work in organ donation. So they’re the people who had been advocating organ donation, and did life turn on them. Now they were in the situation not saying to someone “Would you like to donate?” but saying “We need to donate our son’s organs.”

Through Elaine, Donald’s mother reached out to me. They were doing an article about organ donation awareness, and they asked if we would join them in the article and tell our story. We were interviewed, and our two families were in the article together. We came together, and I still send her e-mails and photos. The thing about organ donation that’s very difficult is that everybody deals with things differently. It’s a very sensitive situation, because someone is dying, someone is dead, and someone has lost a life and lost a loved one.

Q: What is your role with the National Organ Donor Network?

Thomson: I’m on the board. The month of April is the Organ Donation Awareness Month and it’s really kind of new to the program, because we’re really trying to get the word out there. My role is advocacy, awareness and public awareness. I work on the board of public advocacy, and through my company Yummie Tummie I did this tank-top, which is the “Life Tank.” This is our green color. Like breast cancer has pink, we have green. Green is the color for organ donation. One-hundred percent of the proceeds of this tank top will go toward organ donation.

I’d like very much — my dream and hope someday — is to get all my designer friends involved, like they get involved in breast cancer, and to create a big green fashion show.

You touched a little already on why organ donations are so important. Can you talk a little more about it?

Thomson: Organ. Donation. Saves. Lives. In a simple sentence, it saves lives. If we go to our graves with our organs and let them shrivel up and die it is a travesty, when you can pass on something you no longer need and save someone’s life.

Q: How is your son doing today?

Thomson: He’s amazing. He’s a 4-year-old boy who crashes his trucks and beats up his sister. And he’s “Why mom? Why mom?” He’s curious about everything. He’s a delight and he is just a wonderful, wonderful young boy who wouldn’t be alive today if it weren’t for organ donation.

Q: What are the common misconceptions about organ donation?

Thomson: There are a few crazy ones. I’ll start with the easiest: religious. Most people think that for religious reasons they shouldn’t donate their organs; that to desecrate the body is against their religion. There is no religion that I’m aware of, and I’ve looked at most of them, that says that. They all advocate for organ donation. Judaism is the one that I can speak the most about because it's closest to my heart. I’m from a Jewish family. It is the highest mitzvah you can do to give the gift of life, and there is no religion that tells you not to do that. They all say that if you can pass life, that you should pass life. So that’s the first one.

The second one is a really weird one that I heard of and surprised me. Some people think that a doctor may declare you dead when you are not really dead, in order to donate your organs. After doctors say “Listen there are no brain waves,” your family has to be the one that says OK. So a doctor can’t make that call without consent and that’s why people live on life-sustaining machines in comas for years and years and years, because a family can’t ever come to that term. A doctor can’t make that announcement, and the National Organ Board has nothing to do with it. Once that happens, they call and say there are some organs available, and we do need to act very quickly, because you do need to act very quickly so that the organs can be harvested and passed on to those people that need them.

Some people think that the rich get organs first. It doesn’t see money. It doesn’t see creed or color. The national organ donor list is a list based on need and how sick a patient is, so nobody can get moved to the top of that list

Q: Who makes those determinations?

Thomson: It’s the doctors. It’s the doctors of the patients. They have to actually write into the board, which is a board of doctors, and they write down all the technical … like the patient’s blood is zero this and the patient’s this is this and medical terms I can’t really speak for. They talk about the condition of their patient and that is all weighed.

Q: I want to touch a little on how you can be a living donor as well. Can you talk a little bit about that, and what steps people can take to be tested or to become part of that donor bank?

Thomson: The first thing a family has to do if they need a living donation is they have to contact their local news and media, so that the story can get out there, because the more people that know about it, the more people are going to want to try to help.

First, obviously you go within your close niche but there are matches that have to be made. So for marrow or for kidney or any type of organ transplantation you have to be a match, and that’s blood type and other things. The first thing a family that needs a donation needs to do is let the world know, and then once the world knows they’ll call into that number.

If somebody just out of the good of their heart says, “I’ve got bone marrow, and I know I’ve got it,” and if there’s somebody that needs it, I would contact your local hospital or I would contact your local organ donor center because there’s different chapters across the country. .

Q: Is there anything else you would like to add?

Thomson: I think the bad news is that for the first time last year the number of people waiting for life saving, I can cry when I read this, would that be okay, can you read it? My son is healthy, it’s like… it’s just … [overcome by emotion, Thomson directs paper to public relations representative Amy Pellicane to read.]

Amy Pellicane: "The bad news is that for the first time last year, the number of people waiting for life-saving organ transplants in the United States exceeded 100,000, approximately 79,000 need kidneys, nearly 16,000 are waiting for livers, and approximately 2,800 people need heart transplants.” It’s not that people don’t want to give their organs, it’s that they’re not registered.

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