Jamie Dockendorf: Congenital Heart Defect

For parents expecting a baby, excitement and uncertainty are a normal part of the journey. For new parents Jamie and David, however, they never imagined the situation they would face. When Jamie was 31 weeks pregnant with their son Carson, they learned that not only did she need to give birth via C-section nine weeks early, but simultaneously undergo open heart surgery to replace a heart valve and save her life.

“I think we both just went into shock, because what do you do when someone tells you that?” said Jamie. “You never expect that when you’re 27.”

It began in late January 2018 when Jamie suddenly came down with fever, chills and body aches. It was the middle of flu season, and working as a physician assistant at a clinic, she was exposed to a lot of things and initially suspected the flu. She ended up being prescribed antibiotics for possible pneumonia and her symptoms improved for awhile. But then her fever came back, along with intermittent palpitations, a feeling that her heart was racing, and shortness of breath.

“We ended up in the emergency room on a Saturday afternoon and were admitted that night,” said Jamie. “I remember on the hospital ride to St. Cloud, telling David, ‘Oh, this is the ramp we’ll park in when we come back in two months to have a baby.’ But things went completely different.”

Through testing, Jamie and David learned that Jamie had a congenital heart condition that made her susceptible to a cardiac infection. She had developed endocarditis, which is an infection in the heart valve. While the infection can sometimes be treated with antibiotics, Jamie’s aortic heart valve had been destroyed and she required an immediate valve replacement.

Jamie said she and David were “taken aback by the diagnosis” because she wasn’t aware of any history of heart problems or any predispositions for the endocarditis. “Then when we found out that I urgently needed not only open heart surgery, but that our son was going to be born two months early, that was really concerning.” 

Thankfully, Jamie and her unborn baby found themselves in excellent hands with the teams at Abbott Northwestern Hospital, including the cardiologists at Minneapolis Heart Institute® where she was referred due to the complexity of her case. Going into surgery, there were three teams present: the maternal-fetal critical care team, the open-heart surgery team and neonatologists.

“I was an expectant mom; my first worry was for him and him having to be born nine weeks early,” said Jamie. “But I think initially, what gave us a lot of hope was, when we just got to Abbott and were greeted by a large team of specialists and they were all great and very empathetic for our condition. We had confidence going in. And so really, my concern was for Carson, I wasn’t really thinking about what could go wrong with me. So, just the team gave us the biggest hope.”

The surgery was not without complications — at the time of the baby’s delivery, Jamie had a complete cardiac arrest. Her heart did not respond to electronic defibrillation, so for 58 minutes, doctors and nurses performed CPR while Dr. Benjamin Sun put her on a heart-lung bypass machine (ECHMO).

“It was a VERY quiet 58 minutes,” said Dr. William Wagner, a maternal-fetal critical care medicine specialist for Minnesota Perinatal Physicians. “But everybody knew…we knew … we had just delivered this baby for them. And we said, ‘You know what?’ We’re not going to let this happen.’”

Jamie remained on the heart-lung bypass machine and unresponsive for hours after surgery, but eventually stabilized and was told her baby was OK. To help her heart recover, Jamie was sedated and remained on the heart-lunch machine for two days. On Valentine’s Day, she was extubated and woke up to see David come in with a little blue bear to tell her that they had had a boy, along with a picture in her room of Carson. When Carson was five days old, Jamie was finally stable enough to be brought in a wheelchair to the neonatal intensive care unit at Children’s Hospital, which is connected to Abbott, to finally meet him. 

“All babies are a miracle, but he’s our special miracle,” said Jamie. He had his own complications, so he was strong from the beginning too.”

“Ten years ago, Jamie would have been a statistic — a very sad statistic,” said Dr. Sun. “Research helped us understand what tools we needed. Research educates us on how to approach these problems and then we can be better.”

“Having utilized research myself, I now have such a greater appreciation for it,” said Jamie. “Without the funding for that kind of research that they’re doing, people like myself wouldn’t be here to tell this story. I wouldn’t be here to be a mom to Carson, and even if I was at a different facility that didn’t have the resources of ECHMO, things could’ve turned out completely different.”

She continued, “Doctor Wagner was the one who brought Carson into the world and Dr. Sun, he saved my life. I don’t know how you thank somebody for that. And I think my husband and my son would say thank you too, and I just can’t say enough that this (research) is worthwhile supporting because of the lives that can be affected and saved.”

 

“David and I just wanted to take a moment to say thank you for including us in this year’s Gala event. It was an amazing experience we will hold on to for a lifetime. To be honest, when we were approached about doing this, there was never really a question whether we would partake. We looked at it as a great opportunity to be able to share our story, along with our gratitude for the care we received. I feel that we are getting to live this out and are finding so many rainbows to our storm. We feel the work the foundation does everyday is so important, and hope to help shed a light on the importance of ongoing cardiovascular research. There truly are amazing people in this world, and we are so fortunate to have so many of them be apart of our story.” 

Jamie Dockendorf