Waiting for a heart in Streeterville
By Jesse Wright | Staff Writer
Jessica Venditto is waiting for a heart.
The 24-year-old woman was born with a heart condition known as pulmonary atresia, meaning her right ventricle didn’t develop properly. As a result, one of the most important organs in her body can’t do its job.
For Venditto, the road to a healthy life has led her to Streeterville, where she has found hope, friendship and one of the best medical teams in the world. Even though the wait for a new heart may take years, she is optimistic.
The heart condition has led to five surgeries and a pacemaker. Each surgery has been met with complications, making each operation more risky than the last. Venditto has the use of one lung after the other collapsed, and she’s developed end-stage liver cirrhosis, an occasional risk for patients who have childhood heart disease.
This isn’t the first time she has beaten the odds.
In 2010, the Long Island-based family got bad news. Debbie, Venditto’s mother, said her daughter needed a Fontan procedure, a tricky type of heart surgery. Without the surgery, her daughter would die, but Debbie said doctors in New York worried performing surgery in a patient so weak might prove fatal anyway.
“They couldn’t do it,” Debbie said.
The Venditto family began looking for a doctor who could work on their daughter. They found Dr. Cal Backer at Lurie Children’s Hospital.
“He’s the one who saved her life,” Debbie said.
Dr. Backer said the Fontan procedure is complicated, but at Lurie, the staff is used to complicated.
“We’ve done more than anyone else in the world,” Backer said of the procedure.
The 2010 surgery was a success. Things were looking up.
Until Venditto took a turn.
In 2016, Venditto developed liver cirrhosis and today, at stage four, doctors say she desperately needs a new heart to heal the liver. But again, no one in New York City would work on Venditto.
“We reached out to many hospitals,” Debbie said. “Everyone said it was too risky, she wouldn’t make it. The hospitals in New York wouldn’t do it. But Dr. Backer feels he can put a new heart in there and it will rejuvenate the liver. … We know it’s a risky procedure, but it’s our only option.”
Dr. Backer said this is a common story at Lurie Children’s Hospital, which offers one of the top pediatric heart transplant programs in the country.
“The program has been active for 30 years,” he said. “Last year we were number two in the country for pediatric heart transplants. We get some of these most complex cases that have been turned down elsewhere, and we have patients from the other side of the world in our unit right now waiting for transplants.”
Waiting for a new heart means moving to a new home, because when the heart comes in, the patient must go into surgery immediately. Debbie and her daughter left the family in Long Island and moved to Streeterville in August 2018.
In Long Island, the family had a home. But in Streeterville, the Vendittos didn’t know anyone and they didn’t know how they could afford an apartment that would accommodate mother, daughter and Debbie’s parents in addition to a mortgage back in Long Island.
They found Gail Spreen, a realtor with Jameson Sotheby’s International Realty.
“I knew relocating here would be a financial burden, but on top of it all we had to get an apartment, and that’s why God brought us Gail Spreen,” Debbie said.
Spreen heard the Vendittos’ story and was determined to help them find an apartment that was the right fit.
“When I met the Vendittos, I understood what they were needing and looking for in their housing needs. I knew it would be a unique find,” Spreen said. “They were so incredibly honest, wonderful people and Jessica’s story [was] so heart-warming, that I had to see what I could do to help them.”
Spreen was looking for a condo owner who would appreciate their situation, and she found just the couple, the Standfords.
“They were also from New York,” she said. “After everyone met and worked out the details, we got the Vendittos moved in and now part of the fabric of Streeterville.”
“A win-win for all,” Spreen said. “Besides, how could you say no to smiley Jessica and her caring mother, father and wonderful grandparents?”
With that, the Vendittos moved into the 474 North Lakeshore Building.
“It’s beautiful,” Jessica Venditto said. “I love seeing the Ferris wheel everyday.”
“We love Streeterville,” echoed Debbie. “It’s so amazing. … If my husband’s job could relocate, I would move here. Everyone is so much nicer. I don’t want to slight New York, but come on, everyone is so much nicer. It’s our home away from home all because of Gail Spreen.”
The task now is finding a heart.
Originally, Venditto was categorized as 1A, meaning she was at the top of the list for heart donations. Debbie said they might have waited only six months for a heart. But after a rule change because of her age, she was moved to the fourth category, the category for adults.
“It’s going to take years to get a heart,” Debbie said.
Dr. Backer said he hopes the Vendittos’ situation inspires people to become organ donors.
“I think organ donation is extremely important,” he said. “Organ donation takes place during very sad circumstances, but often there could be something good that comes out of it for the family who donates their loved one’s organs.”
In the meantime, the Vendittos are asking people to contribute to a GoFundMe account. Over the past two years, the family has depended on donations.
“We used all the money for medication that wasn’t covered by insurance,” Debbie said.
To contribute, visit gofundme.com/Jessicavenditto.