A remarkable story: A baby has a heart attack before she is even born. With quick action and a unique approach to treatment – despite yet another heart attack after birth – this baby is healthy and going home.
It was an uneventful pregnancy — mother Megan VandeWerken’s third.
“I had no complications at all,” she said. “I was at the beach everyday with my kids until the day before I had her.”
Then, on July 26, Kaysen arrived.
“I looked at her, and she was beautiful,” said Kaysen’s father Stephen VandeWerken.
“They said everything was great. We had no complications and we thought everything was fine,” Megan said.
But within minutes of her birth, Kaysen showed signs of heart trouble. Her doctor in Joliet,where she was born, suggested a quick transfer to Lurie Children’s Hospital.
“I stood there in awe. He said the transfer team would be there in 25 minutes. My heart dropped. I didn’t know what to do,” Stephen said.
It was the right move. Soon after Kaysen got to Lurie’s, doctors determined she had suffered a heart attack while still in her mother’s womb.
“Her electrocardiogram, her blood enzymes, everything suggested that she had a very severe insult to her heart, similar to an adult having a heart attack,” said Lurie Children’s cardiologist Dr. Elfriede Pahl. “It was probably fairly recent before she was born but we can’t be sure.”
Then, a second cardiac arrest.
“I don’t know what you call it – a heart attack. They asked us to leave the room as they tried to control. I stood in the hall and watched the monitor go from 160 to 130 to 90, then zero. I watched them do compressions and shock her to get her back and they got her stable,” Stephen said.
“This is an echocardiogram, which is an ultrasound of Kaysen’s heart,” Pahl explained. “The heart rate is much too fast, and the heart muscle itself is barely squeezing and really not able to pump out blood to the body. This is a sign of severe heart failure. Soon after this is when her heart stopped completely and she needed to go on ECMO.”
ECMO is a mammoth machine that takes over the work of the heart and lungs – it’s a form of life support. Kaysen was hooked up within 17 minutes.
“Later that week they said they didn’t think it was going to get any better and that we had to get listed for a transplant,” Stephen said. “I went home with the other two kids and Megan stayed here and we thought that was normal life. Then we got the call. It was a big day.
“Getting a phone call normally isn’t a good thing and that’s when she told me Kaysen was going to get a heart,” Megan said.
After waiting five weeks and one day, Kaysen had her new heart. And today, just two weeks after her transplant surgery, Kaysen is almost ready to go home.
“Ever since she came off the ventilator quicker than they had said. They had said it would take three weeks to come off the vent and then seven days later they extubated her and to this day she is breathing on her own and good,” Stephen said.
“Usually as long as a baby waits for a transplant is about how long it takes to get them out of the hospital,” Pahl said. “So I would have expected it to take about six weeks to get ready to go home, and she’s only about two weeks out from transplant at this point. She’s had a great recovery.”
Heart transplants in infants are improving – more than 50% of infants transplanted today can expect their hearts to last 20 years and possibly beyond.
To learn more about Lurie Children’s Regenstein Cardiac Care Unit, go to unit, go: www.luriechildrens.org