Sitting on a shelf in 1-year-old Juniper’s bedroom is a picture of a small, red medical device. The image looks out of place, and yet it’s displayed proudly amid the family pictures, stuffed toys and artwork of brightly-colored animals. This prized photograph depicts a Berlin Heart, the very device that kept Juniper alive for six months when her own heart wouldn’t work on its own.
“Without it, she wouldn’t be alive,” said Juniper’s mother, Joni.
At just two weeks old, Juniper was diagnosed with dilated cardiomyopathy, a disease that weakens and enlarges the two lower chambers of the heart. The condition limits the amount of blood that the heart can pump to the rest of the body.
Prior to Juniper’s birth, her mother and father had no indication that anything was amiss. Now, they found themselves living in Children’s Hospital Colorado, awaiting a heart transplant for their first-born child. Doctors told them Juniper had a 50-50 chance of surviving.
“It was really hard in the beginning,” said Joni. “We didn’t know if she was going to make it.”
When Juniper was 7 weeks old, doctors thought they had found a match for a donor heart. But hope soon turned to devastation when it was discovered that the donor heart wasn’t usable. As Juniper’s heart started to fail – and no transplant organ identified – a team of doctors at the Children’s Colorado Heart Institute performed surgery to implant a Berlin Heart, an assist device that essentially functions as a heart outside the body.
Juniper was one of the smallest patients ever to receive the device at Children’s Colorado – and it was the only thing keeping her alive.
Four consecutive strokes
While the Berlin heart kept Juniper alive, it also had some frightening side effects. Shortly after the device was implanted, Juniper experienced severe internal bleeding and spent six weeks in the ICU. At 3 months old, she suffered four strokes – a common side effect in children with Berlin hearts.
“They didn’t know how big the strokes were,” recalled Joni. “They told me she may never walk or talk again.”
Fortunately, Juniper seemed to bounce back after the strokes, but months went by, and a donor heart had yet to be found.
Despite Juniper’s perilous condition, Joni said her family managed to find moments of joy, even as they were living in a hospital room.
“I don’t think back to our time at the hospital and only remember sad stuff,” said Joni. “I have a lot of happy memories, too. She had a lot of firsts there.”
It also helped that Juniper’s parents formed strong relationships with the staff.
“We felt like we had all these people in our corner rooting for us,” said Joni. “Our friends and family were obviously supportive as well, but from the sidelines. The nurses and the doctors were standing there right next to us as we were going through all these traumatic things, so you can’t help but feel like they’re family. I will never be able to repay them or thank them for all they’ve done.”
A perfect match
Finally, at 6 months old, Juniper was matched to a donor. Doctors performed a heart transplant surgery– the 400th such surgery to be performed at Children’s Colorado. This time, Juniper’s new heart was a perfect match. Just eight days later, Juniper was able to go home for the first time in her life.
“The high point was the day we left the hospital,” said Joni.
Juniper has continued to grow and thrive, and she celebrated her first birthday last February.
“It was pretty emotional because we really didn’t know if she was going to have a first birthday,” said Joni. “It was also bittersweet, because I thought about the day she was born and how excited I was and how we didn’t know what was in store. So I cried a little bit, but it was also really happy.”
Today, Joni says she is grateful. Grateful for the care Juniper received at Children’s Colorado. Grateful for her daughter’s new heart. Grateful for every moment that she spends with her growing child.
“I never would have wanted this for my family or my child,” said Joni. “But in some ways it has helped me to appreciate the simpler things – like your child’s health. It certainly gives you a perspective change.”