A Lockport family got the call they have been waiting months for Thursday night. Doctors in Pennsylvania found a new liver for their five-month-old born with a rare liver disease.
Summer was born in July. She was three weeks early, and at first, her mom says everything seemed fine.
"She is a happy, sweet, smiley baby," says Maria LaForme. "We came home normal. We had a one-month check-up, and then she had her two-month check-up, and at her two-month check-up she was jaundice, and we were sent for blood work, and then we were sent to Oishei."
After more tests, doctors told Maria that Summer had Biliary Atresia. It is a rare liver disease where bile can't drain from the liver properly, causing cirrhosis. Only about one in 15 or 20-thousand babies are born with it.
"Shock. Nothing but shock. I did so much research trying to figure out if this is what it is, and what the outcome is, and what everything is that's going on," says LaForme.
Summer was sent to a hospital in Pittsburgh, Pennsylvania where a team of liver specialists attached her intestines to her liver. They also put her on a feeding tube. Ultimately, doctors decided, like many babies with Biliary Atresia, Summer would need a liver transplant. The new liver could come from a deceased or living donor.
"For her, the blood type is A and O that she needs, and what they do is they take about 25-percent of our liver and they can transplant it in her and it will grow up with her, which is fantastic because it's the only organ that you can do that with," says LaForme.
But that meant months of waiting and several trips from Lockport to Pittsburgh all while sticking to a strict schedule.
"24-hour meds. She has seven to eight oral meds. Some must be given three times a day. Then she has to be hooked up to IV nutrients and fats to help her grow because she doesn't eat enough by mouth. Those run for 16 hours a day. I had to be taught how to do that," explains LaForme.
And all of the medicine has to be delivered to the house with precision timing. A week's worth of medicine for Summer fills the LaForme’s kitchen table.
Unfortunately, the liver was too big for Summer and she is now being discharged from the hospital.
"It is very hard. My kids, I miss my kids, my kids miss me. They're missing her growing up. Travel expenses is hard. It's awful. It really is," says LaForme.
But Maria is gaining strength from all of the people who've gotten tested and have joined the living donor database after hearing Summer's story.
"I'm just so incredibly grateful and there aren't any words to put into it to say how grateful I am," she says. "There's angels out there."
You can find out how to be tested or join the living donor database through Maria’s blog where she posts updates about Summer's journey.
You can also support Summer by donating to her GoFundMe page.