When Lauren Aggen was born Dec. 22, 1989, she was given three days to live.
Aggen, 32, was born with hypoplastic left heart syndrome. Doctors said if she didn’t receive a heart transplant within three days, she would die.
“So, if you do the math, three days would’ve been Christmas,” Aggen said.
But Aggen lived eight days, and as doctors were telling her parents they would need to remove her from the transplant list because of her rapidly declining state, the phone rang.
“A baby boy had passed away from sudden infant death syndrome in Austin, Texas, and they thought the heart would be a match for me,” Aggen said.
Now, 32 years later, Aggen is one of the longest-living transplant recipients who hasn’t needed a second transplant. Eight other babies received a heart transplant in Chicago the same year Aggen did. She is the only recipient who has not received a second transplant. April is National Donate Life Month.
“The doctor flew from Chicago to Austin, Texas, and got the heart,” Aggen said. “There was a snowstorm, but they got the heart to me and put the heart in my body, and it just started pumping. I’m now 32 years old and I have the same heart.”
The medication Aggen takes for her heart damages her kidneys, but she hasn’t required a kidney transplant.
“The medication I take for my heart does damage my kidneys, so I do have renal failure,” Aggen said. “So, right now, I don’t need a kidney transplant, but in the future that is a possibility.”
Aggen’s hearing also was damaged by the medication she took as a baby while waiting for a heart. She is fluent in American Sign Language, and she hasn’t let any of her physical hurdles get in the way. The Indianapolis resident works for the federal government near Lawrence and and gives talks across the U.S. on organ donation.
“I went to school and I got involved with Donate Life (a nonprofit that advocates for of organ donation),” Aggen said. “I love doing outreach in the community about organ donation awareness. I also like meeting people. I like to talk to people.”
As a teenager, Aggen became sick and was the recipient of a Make-A-Wish Foundation wish.
“The Make-A-Wish Foundation came to my bed and said, ‘Lauren, what do you want to wish for?’ And I wanted to write a book to thank my donor family for making life possible,” Aggen said. “I was very sick and didn’t know if I was going to make it.”
With the help of Make-A-Wish Foundation, Aggen published a book called “Austin’s Gift,” because her heart came from a family in Austin. Donor recipients can write a letter to their donor family, who can accept or decline the letter. Aggen wrote a letter but has never received a response.
“I went to Austin, Texas, to give a presentation at the Texas School for the Deaf and went to the library and looked through obituaries, but I couldn’t find anything,” Aggen said. “I have never met my donor family.”
The heart transplant impacted others in Aggen’s life. Her brother, David Aggen, went on to become a doctor.
“I impact other people in different ways, and if it wasn’t for me, my brother might not be a doctor. Now, he’s an oncologist and helping others,” Aggen said. “I’m very grateful for my life. I would never want to force someone to be an organ donor, but my life has been strongly impacted because of the gift of organ donation. I do feel a purpose and a need to let people know.”
Aggen and her husband, Stephen Sweet, live in Indianapolis.
For more, visit donatelifeindiana.org.
A “poster child for the transplant program”
Lauren Aggen received a heart transplant when she was 8 days old. She is now 32. Her mother, Janet Aggen, said when Lauren was little, she got involved with different aspects of organ donation.
“She was often kind of a poster child for the transplant program in Chicago,” Janet Aggen said. “We met a lot of interesting people. We met families who had donor members who had passed away. From talking to them, what we learned is, what often helped them in these tragic times is they saw some positive thing come out of the situation. It’s a magnanimous gift. In their time of grief and sorrow, they could look to help someone else. How marvelous.
“As we met with those people over time, they would talk about the comfort it was to them that their child went on in a new way.”