At first glance, Cooper Cota and Susana Casio appear to have nothing in common.
Cooper is a rambunctious 3-year-old who loves Hot Wheels and dinosaurs. Susana is a 63-year-old former nurse who was forced to retire when intense back pain and autoimmune vasculitis — inflammation in the blood vessels — began to impact her quality of life.
Last fall, however, both Cooper and Susana found themselves in need of a liver transplant. Cooper was in end-stage liver failure due to an inherited condition called Alagille Syndrome, in which bile builds up in the liver and damages it, according to Johns Hopkins Medicine. Susana was dealing with fatty liver disease exacerbated by her other health issues.
But in a twist of fate over Labor Day weekend 2023, Cooper and Susana each received part of the same donor liver during NYU Langone’s first-ever split liver transplant. Now they are bonded for life.
Susana received 80% of the organ, while surgeons sliced off the remaining 20% to give to Cooper.
“It's a miracle, but it's really possible with the doctors that NYU [Langone] has. I can't stop thanking them,” says Susana, who lives in Jersey City, New Jersey.
“Everything is different," she says, adding that she is now pain-free.
Cooper’s story begins much differently than Susana’s. His parents Amanda and Sherman, who live in Egg Harbor Township, New Jersey, knew almost immediately after their son’s birth that something wasn’t right. Alagille Syndrome runs in Amanda's family; while she has a mild case, her sister Nicole died from complications after a liver transplant in 1992, just after her first birthday.
Coincidentally, Cooper was born on what would’ve been his Aunt Nicole’s 30th birthday.
"It just felt like a sign," says Amanda. "She's his guardian angel. She's been looking after him, and [his birthday] was meant to fall that way.”
Cooper was soon diagnosed with Alagille Syndrome. In addition to destroying the liver, the condition also affects the heart and other organ systems, and symptoms include itchy skin, delayed growth and severe jaundice — all of which Cooper experienced.
"We never actually knew what color his eyes were until about two days after transplant,” says Sherman, referring to how yellow he looked from the liver failure.
Dr. Nadia Ovchinsky, the director of Pediatric Gastroenterology and Hepatology at Hassenfeld Children’s Hospital at NYU Langone — sees Cooper regularly for follow-up care. She's also the doctor who originally referred the toddler for a transplant after seeing how much he was suffering.
"Cooper had a really difficult time with growing and developing because of his advanced liver disease, and itching can actually be a terror in this diagnosis," she explains. "He would wake up covered in blood — his sheets were covered in blood — and he would go to the emergency room because he would scratch himself so much and his liver was not working well so that bleeding from a scratch wouldn't stop.”
Cooper's family worried about him getting a transplant, considering the fact that his aunt had died while waiting for one.
But the call came one Saturday morning.
“My phone rings — and from the moment he was listed, every time my phone rang, no matter who it was, I would jump out of my skin a little bit — and I saw the 'No Caller ID' and it's a Saturday, and they don't call me on Saturdays," recalls Amanda. "I looked at my phone like, 'I know who this is and what they're about to say."
She remember thinking, "My baby needs this. And I know in the back of my mind, this is going to be the best thing for him and this is going to change his life and this is a good thing."
The family rushed to the hospital for the surgery, which happened the next day.
“I'll just never forget when it came time to actually take him down, he was just asleep, passed out in this little pediatric ICU crib, and he slept the whole way down,” says Sherman. “And when we got to the OR and they finally took him in, he was still sleeping, and I look at [Amanda] and we're just kind of like, ‘This is the best thing for him. He's in great hands.’”
Amanda agrees that it was an emotional moment.
“Watching your baby go through the doors, not knowing what's going to happen? It's just terrifying,” says Amanda. “And then they're like, ‘Go get some rest.’ And you're like, rest? I don't know if I can get some rest. We were up the whole night.”
The surgery took place on the Sunday of Labor Day weekend, a "remarkable" effort, according to Dr. Adam Griesemer, the surgical director of the Pediatric Liver Disease & Transplant Program at Hassenfeld Children’s Hospital, who performed Cooper’s transplant.
"We had surgeons on their weekend off come in. We had nursing staff on their weekend off come in; OR technicians come in so that we could basically do three operations all at the same time: the cutting of the liver into two halves and then the two transplants at the same time," he says. "A lot of people spent time away from their families, their barbecues, those kinds of things to make this happen to both of these patients."
Cooper's surgery was a success. The first thing he asked for upon waking up was his favorite beverage.
“As he was waking up from anesthesia, the first words out of his mouth were 'Apple juice, mama. Apple juice please.' And because of the way they had done the surgery, he couldn't have anything to eat or drink for 48 hours," explains Sherman. "And then the moment came when they're like, all right, we're going to clear him for apple juice. And I'm like, there's no way that I'm not taking a video of this.”
Sherman posted the sweet clip of Cooper to TikTok, and the video of the 2-year-old went viral. Since then he's been inundated with apple juice, Hot Wheels, and dinosaur toys from his tens of thousands of followers.
Friends of his parents have also set up a GoFundMe to help cover the cost of Cooper's medical expenses.
"We were getting messages from all over the world and a lot of people had reached out and said that it helped them in their own journey to see Cooper being so strong," says Sherman of his son's viral fame.
For Amanda, the most revelatory moment was seeing the extent of the damage to her son’s liver. After the surgery, she and Sherman were shown contrasting photos of Cooper's original liver and the new organ.
"[Cooper's] was green and decomposed. I thought it was like a zombie liver," Amanda says. "And then you see a picture of the liver that he got and how healthy it looks and what the difference is and I'm like, 'that was in my son, the old one?' It was [realizing], yes, he needed this."
Now, six months post-transplant, Cooper continues to recuperate at home with his family, and he's doing better than ever.
On Feb. 26, NYU Langone brought the two transplant patients together for the first time to celebrate Cooper’s third birthday, which took place Sunday, Feb. 25.
“It was so beautiful,” says Susana of the meeting. “You can't believe that he has a liver transplant. He's jumping up and down. He's so busy. He's so jolly. He's so smart. He sings.”
Cooper's parents were equally bowled over by the day.
"It's almost like a piece of your son lives in this other person. That was a surreal moment specifically for me," says Sherman of meeting Susana. "There was a moment where Cooper came up to her and he threw his hands up—"
"He was like 'So big!'" says Amanda with a laugh. "He's growing just intellectually, physically, developmentally. He's just a whole different kid."
