Olivia at home, nine months after receiving her new heart.
One late August morning, Olivia Strama broke out in a rash and started breathing “a little funny,” says her mother, Amanda Strama, who thought she might be dehydrated. But after Olivia’s pediatrician examined the 4-month-old and immediately called for an ambulance, both Amanda and her husband, Alex, suddenly realized Olivia’s condition was much more serious.
Amanda jumped into the ambulance that took baby Olivia to Franklin Square Hospital Center. There doctors also suspected dehydration until lab tests showed her bicarbonate level was low, suggesting causes like hyperventilation, kidney failure and heart problems. Olivia was rushed to the pediatric intensive care unit at the University of Maryland Medical Center.
“We were kind of in shock,” says Amanda. “We didn’t know what was going on but we still didn’t think anything was majorly wrong. They’re going to fix it and we’re going to go home tomorrow.”
“I’m an optimist so I tried to be positive,” adds Alex, “but we were pretty scared.”
The Baltimore couple had good reason to be alarmed. After a night of tests at Maryland they learned the left side of Olivia’s heart was failing severely and that her only option was a heart transplant. They were, in their own words, “devastated.” Then doctors recommended that Olivia be transferred as soon as possible to Hopkins Children’s, which had a machine called ECMO (extracorporeal membrane oxygenation) that takes over the oxygenation and blood filtering functions of the heart and lungs – a machine that could help Olivia get better long enough for a transplant operation. The parents, now in an even greater state of shock, agreed.
“The look on the doctor’s face told me how bad it was,” says Alex. “This was about as hard core as it gets.”
That same day a Hopkins Children’s team of two physicians, two nurses and two emergency medical technicians arrived at Maryland to transfer Olivia. When the parents arrived at Hopkins Children’s they were escorted into a small conference room where they heard even more bad news. Olivia had gone into cardiac arrest – her heart had stopped beating for two minutes.
Doctors had revived her heart but it was in a state of cardiogenic shock – it was not pumping enough blood to sustain the vital function of organs. She needed to be placed on ECMO immediately.
“We had just gotten there,” says Amanda.
“Now we had a group of friends and family with us,” adds Alex. “We started crying, hyperventilating.”
While the parents waited, pediatric cardiac surgeon Luca Vricella attached the ECMO pump to the baby through catheters he placed into blood vessels in the baby’s neck. Then he stepped into the small conference room to update the Stramas on Olivia’s condition and her options for treatment, a conversation he’s had with countless parents of children with failing hearts.
“You walk into a situation where the parents are completely shattered, where two days earlier they had a perfectly normal child and now you’re talking about heart transplantation,” says Vricella. “The most important thing you can do as a physician is to give them hope.”
For the Stramas, first-time parents, Vricella’s words were relieving.
“He came in very confidently and said if we get a heart tomorrow, we’ll put it in,” says Amanda. “There was something about the way he spoke, that everything somehow was going to be okay.”
“He basically put a calm over 25 people,” adds Alex.
But Vricella was not without his own worries. ECMO is only a bridge to a heart transplant, and one that is not without limits or downsides of its own, including possible blood clots and infections, kidney damage and stroke. Already he and the pediatric cardiac transplant team were taking steps to procure a VAD (ventricular assist device), a portable heart pump that could keep blood pumping to Olivia’s organs until a donor heart arrived. But securing a VAD means jumping through a huge number of bureaucratic hoops – including obtaining on a case-by-case basis approval from the Food and Drug Administration, an internal review board at Hopkins Children’s, and the parents’ health insurer. Similarly and simultaneously, all the steps in preparing for a transplant operation must be taken, too.
“All those things, for both VAD and heart transplantation, have to come together. And the kid is on ECMO and the clock is ticking, so you have to act fast,” says Vricella. “My job is to make sure that if we cross that point of no return, the point at which ECMO is too much of a burden on the patient, we can transition very rapidly to a ventricular assist device.”
The good news was Olivia’s acuity placed her high on the heart transplant list. Also, because blood compatibility with a donor heart is not essential for infants, Olivia had expanded her pool of potential donors. The bad news was tiny infant hearts are hard to come by, and there was no telling when or if a donor heart would become available.
All this had been shared with the Stramas, who were literally living with Olivia in the PICU. They liked the idea of an assist device, because at least then Olivia would be unhooked from ECMO and they would be able to hold her and talk to her. But they also realized that it could be weeks or months before Olivia received a new heart, or that she might never get one. But they believed she would.
If they were praying for a miracle, one came their way the night Olivia was placed on the transplant list. Alex had convinced Amanda, who had been by Olivia’s side since the visit to the pediatrician a week earlier, to get some sleep at home. But as she hugged her mother before walking out of the unit, a PICU nurse, holding a phone in the air, said, “Wait a minute, you’re not going anywhere. They found a heart.”
Amanda took the phone and heard Vricella’s voice: “This is a dream come true. We have a heart, a perfect match. I’m flying down to get it.”
Amanda Strama was stunned, as was Vricella. Infant donor hearts rarely become available within hours of a potential recipient being placed on the transplant list.
“You have to imagine how many things have to fall in place for this to happen – a donor becomes available and a tragedy for another family becomes your joy,” says Vricella. “Then you have to procure the heart, which is going to be arrested for five hours as you run back with it to a recipient team already up and running. This just doesn’t happen, but when it does it is so incredibly fulfilling.”
As Vricella returned with the heart, Amanda and Alex waited with their family and friends in a small room outside the suite of operating rooms at Hopkins. Hours later Amanda heard running down the hallway outside the door. She peeked out and saw Vricella heading into the OR suite with a cooler in hand and two security guards in tow. She turned back to her family and friends in the room: “I just saw Olivia’s heart,” she told them. “I saw it go right by.”
Indeed, a phone call from the OR a minute later confirmed what Amanda had seen – Olivia’s heart had arrived and her transplant surgery was underway. The four-hour surgery couldn’t have gone any smoother, says Vricella, and like other heart transplant operations, it held that special moment: “Every operation is similar but every time the heart starts beating again, it’s like a brand new feeling, a magical thing. It’s a brand new life for these kids, and for our team a brand new reward.”
“We all kind of breathed at that point,” says Amanda. “It’s so hard to explain, but I think it was a lot of faith happening—faith in the hospital and faith in God.”