Her daughter, 15, desperately needed a transplant. So a determined mom donated her kidney.
This summer, the last thing on Kaitlin Seigel's mind was whether she'd be able to enjoy a Thanksgiving meal with her family.
The 15-year-old from Clark, New Jersey, felt nauseous all the time. She was listless and all the color was gone from her face. She couldn't eat, and the lack of nourishment was making her weak. She didn't want to hang out with her friends or take part in any school activities, fearful she might get sick. The isolation made her sad and anxious.
Her kidneys were failing. An exam revealed they were functioning at just 10%. Kaitlin's parents, Jennifer and Ken, were at a loss.
"It was a really difficult time," Jennifer said. But it wasn't entirely a surprise, either.
Kaitlin has Charcot Marie Tooth disease, a condition that can affect movement and sensory nerves. (It has nothing to do with her teeth, Jennifer said. It was named for the three doctors who discovered the disease). Its severity can vary widely, but Kaitlin has a rare, more serious form of the incurable disease.
The Seigels knew Kaitlin would need a transplant. But they also understood better than most families what that would entail: Ken also has CMT, an inherited genetic mutation, and has had three kidney transplants, his first in 1987.
"It's not that you want that experience for your kid," said Ken, who works in advertising sales. "But we knew what to expect."
As daughter struggled, family makes a decision
Now 54, Ken recalled getting up early on the day of his prom so he could receive dialysis. He's open about his medical history: "You grow up faster, and you just deal with it."
As he and Jennifer saw Kaitlin struggling, though, they knew they didn't want her to have to go on dialysis. They contacted Cooperman Barnabas Medical Center in Livingston, New Jersey, so Jennifer could register as a living donor and be tested to see if she was a match for Kaitlin.
She was.
Mother and daughter were taken into their respective surgeries on Aug. 2, and the results for Kaitlin were almost immediately positive. Her new kidney is fully functioning and she's back to herself, back at school and back to spending time with her friends. They're grateful, too, for the doctors and nurses who took such great care of both of them.
For Jennifer, 45, there was no hesitation in giving a kidney to her daughter. "The doctor said to me, 'You'll be fine, you've had two kids,' (the Seigels have a 13-year-old son, too) and I knew I had to do this for Kaitlin," she said.
Kidney transplants tend to mean a more difficult recovery for living donors than from the recipients, and while Jennifer said there was a lot of routine post-operative pain, there was also the joy of knowing her daughter's life would go back to normal.
"She went in sick and came out healthy," Jennifer said, "and I went in healthy and needed some recovery time."
Still, she said it was "100% worth it. The pain I went through meant nothing next to seeing her get better."
'I am living a normal teenage life'
The whole family is grateful to see Kaitlin getting back to her usual happy, energetic self.
The teenager is a big Broadway fan, and she has seen "Moulin Rouge" a dozen times. On the day the family spoke with USA TODAY, they had just seen a show in New York and had tickets to see another one soon.
Kaitlin's dream is to attend the Tony Awards (June 16, 2024), but mostly, she said, she's happy because "I am living a normal teenage life."
"We are extremely thankful," Jennifer said. "It's been almost four months. Life with kids moves very fast. She was very sick, and then she had the surgery and she went back to school in September, and she's back to normal. It's almost crazy when I stop to think about it."
Jennifer, too, is back to normal, going to the gym several times a week, raising her family with Ken and working as a mortgage loan officer. They're both optimistic about their daughter's future, and with good reason.
"Look at me," Ken said. "I have a good, productive life and a great family."
And about that family: CMT isn't the only trait that's inherited. So is a deep sense of love and selflessness. Jennifer's mother, a personal trainer, volunteered to be a donor (at 71, she is past the age range for eligibility).
And Ken's first kidney transplant came when he was a teenager. The donor: His own father.
Contact Phaedra Trethan by email at [email protected] or on X (formerly Twitter) @wordsbyphaedra.