Todd and Lindsey Taylor had barely settled in at home in Syracuse, New York with their new baby, London, when their world turned upside down.
London, who had seemed perfectly healthy at birth, woke up nine days later vomiting and struggling to breathe. They rushed her to their local children’s hospital.
“The doctors did an ultrasound and found a large blood clot in her aorta that was blocking the flow of blood to her kidneys,” says Todd. “They said she was in near fatal condition when we arrived, but they put her on dialysis and were able to stabilize her.”
Desperate for options
The doctors in Syracuse started London on a medication to keep the blood clot from getting bigger, but it didn’t reduce the clot’s size. Left with no other options, her team in Syracuse began looking for another children’s hospital that could treat London. Time was of the essence, because without proper blood flow to the kidneys, they would eventually fail permanently.
“The color in her legs was very pale, almost greenish, because the clot was so huge it was blocking blood flow to them,” says Todd. “It was really scary.”
The first hospital they reached out to said there was nothing they could do.
“We were devastated,” says Lindsey. “We knew we were looking at a short window for her kidneys and we didn’t know where to turn.”
That same day, the family got good news from Boston.
“When they called us, we knew that we could very likely do more to help,” says Dr. Anne Hansen, medical director of the Neonatal Intensive Care Unit (NICU) at Boston Children’s Hospital. She spoke with Dr. Heung Bae Kim, director of the Pediatric Transplant Center at Boston Children’s, who suggested he might be able to do a thrombectomy, surgical removal of the clot, and urged for London’s immediate transfer.
“Our Midaortic Syndrome and Renovascular Hypertension Program routinely cares for children with aortic diseases,” says Kim. “This gives us significant experience with aortic surgery in newborns, something most pediatric surgeons wouldn’t be comfortable doing.”
Hansen arranged for London’s transfer, and assembled a team of surgical, nephrology and hematology colleagues to prepare for her arrival.
A plane ride and a plan
A transport plane from Boston Children’s arrived in Syracuse that same day to pick her up. Lindsey flew with London, and Todd drove to meet them. After reviewing London’s records and doing a CT scan, Kim and the team at Boston Children’s determined that surgery was London’s best option, based on the clot’s large size.
The Taylors understood the procedure wasn’t without risk, but agreed it was the best option for their daughter.
“We had consulted other hospitals and talked about other options, but we felt confident in Dr. Kim and decided we had to go for it,” says Todd. “We weren’t going to sit back and watch our baby’s kidneys fail and then have to hope for a kidney transplant.”
A successful surgery
The surgery took about three hours, and the results were nearly instantaneous.
“Dr. Kim said her legs and feet turned pink almost immediately after the clot was removed and she had a couple drops of pee,” says Lindsey. “A few days later, they took out her breathing tube and we got to hold her. We were elated.”
Hansen says the medical team is delighted with London’s outcome. They were able to remove her from dialysis right after surgery, though her kidney function is still recovering. She continues to improve every day, and after six weeks in the hospital, the Taylors are finally settling back in at home.
“Boston Children’s has been incredible to us — everyone has been so accommodating,” says Todd. “Dr. Kim is such a special man. We owe everything to him and all the other doctors and nurses on London’s team.”
Learn more about our Neonatal Intensive Care Unit (NICU) and the Midaortic Syndrome and Renovascular Hypertension Program.