Amber Ciesielski remembers the sensation of looking down from above, watching her husband perform CPR on her lifeless 32-year-old body.
“I don’t know if you could call it an out-of-body experience, but my dad was there with me,” she said. “He was talking to me and urging me to go back. I was very drawn to this peaceful, calm feeling that was pulling me farther away. My dad was very much pushing me back.”
Her dad, Chuck Allen, died two years prior.
July 24, 2016, started like any other day. Amber and her husband, Brandon, and their five children visited Kirk Park near Grand Haven, Michigan. They swam. They cruised the lake in her brother’s boat. They delighted in each other’s company.
“I was very active that day, but I didn’t feel anything weird,” she said.
Her oldest daughter, Taylor, 11, hosted six friends in the basement that night for a sleepover.
Amber went to bed and awoke about 5 a.m to nurse her 8-week-old son, Cason.
She returned to bed at 5:25 a.m.
Then, her world began slipping away.
At about 5:30 a.m. her husband, Brandon, awoke to a gurgling sound—Amber, in full-blown cardiac arrest.
“He said he just knew something was wrong,” Amber recalled. “He tried to rouse me and couldn’t.”
Brandon said he reached for his wife’s body, only to find it lifeless.
He immediately started CPR. He screamed. The kids, including the basement guests, woke up.
“I was freaking out,” their daughter, Taylor, said. “My friends started freaking out.”
Death literally knocked on my doorstep and Brandon grabbed a hold of me and wouldn’t let me go.
Amber only learned these details later. In that moment, in the early dawn hours of that fateful Sunday, survival had seemed the only detail that truly mattered.
The couple’s 8-year-old son, Cooper, ran into the room. He followed his dad’s instructions and called 911.
Cooper held the phone by his dad’s mouth so he could talk to the dispatcher as he continued CPR.
“Brandon was dripping sweat,” Amber said.
Cooper poured a glass of water down his dad’s throat as he continued life-saving measures.
First responders arrived 18 minutes later. In the bedroom, they shocked Amber’s heart twice to restart it. They shocked her again when her heart stopped in the ambulance, en route to Spectrum Health Butterworth Hospital.
“When she presented to us, most of her end organ function was affected,” said Milena Jani, MD, a cardiologist with Spectrum Health Medical Group. “She did not respond to stimuli. To preserve brain function, we lowered the core body temperature for 24 hours and then slowly rewarmed her for the next 24 hours.”
In layperson’s terms, Dr. Jani said Amber suffers from a weak heart muscle.
“Because of that, she had a heart rhythm that was not compatible with life and her heart stopped sending blood to her organs and the heart itself,” Dr. Jani said. “We call that cardiac arrest.”
The problem could have stemmed from genetics, or perhaps from her recent pregnancy, Dr. Jani said.
According to the latest American Heart Association statistics, with good CPR—in most cases, CPR performed by EMS—only about 8 percent of patients who suffer cardiac arrest at home survive with intact brain function.
Amber is fortunate she’s among that sliver of a statistic.
Diagnosed with left ventricular non-compaction cardiomyopathy, Amber’s heart is dilated and prone to abnormal beating patterns.
Doctors also inserted an implantable cardioverter defibrillator under Amber’s skin to shock her heart into rhythm in the event anything like this happens again. The device is about the size of a hockey puck, with wires that wrap around her heart.
“They think my heart went into arrhythmia and my heart electrically canceled itself out,” Amber said.
She had been aware of the irregular beating at times, but never did anything about it.
“I didn’t have any chest pain, didn’t have any shortness of breath,” she said.
When she woke in the hospital two days after her cardiac event, she had a difficult time digesting all that had happened. She remembers nothing.
“It was just really surreal,” Amber said. “I came home Friday evening and I just cried the entire discharge day. …I woke up and they’re telling me all this stuff happened. It was a lot to take in.”
Recovery proved difficult, too. Amber had been just eight weeks removed from delivering Cason via C-section.
Her body took another blow with the heart trauma.
These days, she has to lie low.
“I can’t put any stress on my heart,” she said. “I can walk or do elliptical for exercise. I can’t go for a run.”
Amber said doctors informed her it’s a rare form of heart disease. If you followed three patients with the disease, you’d find one would get better, one would remain the same and one would get worse.
“But in those studies, there are a lot of 85-year-olds,” she said.
But there’s also a 5-year-old possibly included in those statistics.
Amber’s brother died from the same heart complication when he was in kindergarten.
“They didn’t know what it was back then like they do today,” Amber said. “They had my heart checked when I was born and told them I was fine. There was never any cause for concern or reason to get it checked later in life.”
Turns out, she likely inherited a rhythm dysfunction gene from her dad. Doctors believe she got the non-compaction gene from her mom.
Although there had not been an autopsy to confirm the reason for her father’s death in 2014, it appears it was heart-related. Amber wonders. Was it a heart attack? Cardiac arrest? Her mom died of cancer in 2004.
Sitting on the couch inside her home in Allendale, Michigan, with Cason napping in his nearby bedroom and 4-year-old son, Easton, romping on the floor, Amber said she still fatigues easily. It’s difficult keeping her medicines regulated. Sometimes her blood pressure bottoms out.
As she spoke, she asked Taylor to grab a bottle for Baby Cason.
While feeding her baby, Amber explained how she sees her cardiologist every three months and how she gets device checks on her defibrillator implant every three months, too.
“I am young and I don’t have any other health problems, so that obviously works in my favor,” she said.
She paused when asked for more details about her out-of-body experience. The memories flow. Vividly. Almost eerily.
Her dad. He was definitely there with her as she slipped from one world to the next.
“He said, ‘Amber Kay, you’ve got to go back. It’s not your time. It’s not right now. You’ve got to go back,'” she said. “He was just very persistent.”
Although that memory is clear, others, not so much.
“I had a lot of problems with short-term memory,” she said. “When I first woke up, it was like, ‘Where am I? What happened?’”
She asked the questions over and over again.
When she became more self-aware and learned she couldn’t breastfeed anymore, she wept. That mom heart inside her, bursting with so much love for her baby, could not sustain the risk of feeding him.
“They told me I couldn’t breastfeed because it was too hard on my heart,” she said. “And because of the medications I was taking.”
She recalled her first meeting with the cardiologist after being released from the hospital.
“She sat me down and had this come-to-Jesus talk with me,” Amber said. “‘Your heart is very bad. Your heart is extremely weak and it’s not going to get better.’ I was crying. I was really scared.
“I have five young children,” she said. “Your mind automatically jumps to how long you can live with this heart, how long am I going to be around? The future is just so unknown. There are no great answers.”
I feel like I was totally given a second chance. I know there is a reason.
Will she be around to see her children graduate? Will she ever meet her grandchildren?
There are other concerns. Her children were recently tested for genetic heart trouble. Annica, 7, Easton, 4, and Baby Cason have the same heart issue.
“It’s totally devastating,” she said. “I’m still trying to wrap my brain around it.”
A second chance
Brandon said it’s been a difficult road, but the family has learned deep and lasting gratitude.
“You know that whole cliché, ‘You don’t now what you got ’til it’s gone?’” Brandon asked. “To have something like this happen, it opens your eyes to the fact that life is pretty darn short.”
He said he freaked out the instant he found Amber lifeless, but then something switched inside him. He remembers thinking as he performed CPR: “I have to save her, just keep pressing until somebody shows up.”
Amber feels like she saw the other side. She’s grateful to be on this side, where she’s still needed by a loving husband and five kids who call her mom.
“They tell me there’s less than a 5 percent chance of surviving a home cardiac arrest,” she said. “For Brandon to do CPR as long as he did, I can’t even put it into words. I feel like death literally knocked on my doorstep and Brandon grabbed a hold of me and wouldn’t let me go.
“I feel like I was totally given a second chance. I know there is a reason.”
This type of cardiac arrest is typically fatal. Amber knows that.
“This is the type that kids fall over on the basketball court and die from,” she said. “I feel each little mundane thing I get to do as a mom has more meaning now. I could have missed the first day of school this year. I could have missed right now.”