April is National Donate Life Month.
Thousands of lives are saved through organ donation each month, like a little girl named Penelope.
“I just remember everyone jokes about the room going silent when you hear something but I remember sitting there when the doctor had said liver transplant and here she was 2 days old,” said AmberJean Hansen.
It was a living nightmare when Hansen heard words that no new mom wants to hear. Her baby girl Penelope had a rare liver condition, and she would one day need a transplant.
“She was two days old and you think liver transplant and we had been worried about what do they sleep in when it gets cold, and what type of bottle should we use,” Hansen said.
However, instead of worrying about a blanket or a bottle, Hansen was preparing for years of medical care.
Penelope was diagnosed with Biliary Atresia, a congenital defect that causes scarring in the liver.
“In January of 2017 she was listed on the transplant list at Yale, at age 3, and by that time she was tired a lot, she would get bloody noses, her gums would bleed from too much activity, she had a huge stomach, her spleen was enlarged, she had varices in her throat,” Hansen said.
She was going to give her daughter a piece of her liver, but that didn’t work out.
The need for livers is greater than what can be provided by deceased donors.
“There are about 14,000 patients waiting for a liver transplant in the U.S., only 8,000 would get a transplant in a year,” said Dr. Ramesh Batra, Penelope’s surgeon at Yale New Haven Hospital.
He said there is another way, with a living donor.
“By donating a piece of the liver, the liver regenerates in the donor so it doesn't cause a big catastrophe,” Batra said.
That's what changed everything for Penelope.
“Then we got this amazing phone call that someone came forward anonymously and said I have this amazing liver, and I’d love to give it to a pediatric patient,” Batra said.
Seven months ago, Penelope had surgery to get her new liver.
“She was out of here in a week, home, a week, with a new liver,” Hansen said. “Completely different kid, lost 6 inches off her waist, just from the size of her spleen.”
Their lives have changed completely.
“They saved our family, everything changed since then, not just her, to be able to focus on normal stuff, what are we making for dinner, not we have a million doctor's appointments and her stomach hurts,” Hansen said.
All of this was made possible by a living donor, and the special center at Yale New Haven Health.
“The transplant center at Yale New Haven Health is unique in a few ways, one being it has a strong and successful adult and pediatric liver transplants, and the other important one is center for living organ donors,” Batra said.
They also provide care for the donors for the rest of their lives.
AmberJean has a message for the donor who saved Penelope's.
“Thank you but thank you seems to fall so flat, you've saved a child, that means the world to her family and who knows what she's going to do with her life, and you're always going to be a part of that,” Hansen said.
Now it’s a bright future and a normal life, for a little girl and her family.
Penelope will begin kindergarten in the fall, something her parents were unsure of before the transplant.
For more information on the living donor process, click here.
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