ACEY, Wash. — Five days after Sienna was born, Jen Rohe knew something was terribly wrong.
The new mom first began feeling short of breath. She tried to climb the stairs and found herself panting, exhausted, far more fatigued than an active 30-year-old woman, even one who just gave birth, ought to be.
Rohe, a Greenfield native, returned to Madigan Army Medical Center in Washington, where she’d delivered her daughter, and doctors ran a barrage of tests. The diagnosis shocked the otherwise healthy new mother — heart failure.
Rohe, who today lives about an hour south of Seattle, was suffering from postpartum cardiomyopathy, a rare form of heart failure that happens during childbirth or up to five months after.
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And the condition is serious. Fewer than 48 hours after being admitted to the hospital, Rohe was transferred to the University of Washington Medical Center and placed on life support. A machine pumped and oxygenated her blood so her weary heart could rest. When she awoke from the sedation, she learned the worst was yet to come: she’d need a heart transplant.
Looking back on it now, with Rohe on the road to recovery, the months following Sienna’s birth feel like a whirlwind.
While her infant daughter was settling into a new nursery, Rohe was torn away from home. She spent 70 days in the hospital — more than 40 in intensive care, and underwent treatment, including implantation of an experimental artificial heart, to keep her alive for more than a month until a donor heart was found.
The 2005 graduate of Greenfield-Central High School suffered setback after setback, from a stroke to the initial rejection of the heart meant to save her, before doctors were finally confident she would recover and could return home to her husband and two children.
Neither Rohe nor her husband had heard of postpartum cardiomyopathy before it nearly killed her, she said. Doctors told her if she’d waited one more day to return to the hospital, she probably would have died.
Their families, friends — even strangers on the internet — supported Rohe throughout her ordeal, with family members staying in Washington for months to help with their kids and some 235 people raising nearly $20,000 to help them through.
Online support groups for women who faced the same condition reached out to Rohe to encourage her through some of the scariest moments, she said.
It’s a helping hand she’d like to offer others who need it one day.
“When I get better, I’d like to volunteer for these types of organizations,” she said.
She was fortunate to live nearby the University of Washington Hospital, one of the country’s largest heart failure clinics, said husband Chris Rohe, an Army dentist and a resident at the medical center where their daughter was born.
Doctors at the hospital removed her heart and replaced it with a SynCardia Total Artificial Heart, a device currently under a U.S. Food and Drug Administration trial. Jen Rohe was only the seventh person in the country to enter the trial and only the fourth person to receive a smaller version of the artificial heart. She needed the smaller version because of her petite frame, she said.
In retrospect, the daughter of Jeff and Robin Lowder of Greenfield realized she was showing some symptoms before her daughter was born, including swelling legs, a fast heart rate and fatigue — all inconveniences she had attributed to the typical third trimester of pregnancy.
Meanwhile, the chambers of her heart enlarged, and the muscle weakened, leading to less blood flow.
The condition leaves the heart unable to meet the demands of the body’s organs for oxygen, affecting the lungs, liver and other body systems, according to the American Heart Association.
Between 1,000 and 1,300 women per year in the U.S. develop the condition, according to the association, but most recover or must undergo less drastic solutions to their decreased heart function, Chris Rohe said.
His wife’s severity was the worst her doctors had ever seen, he said, a theme that repeated itself throughout her hospitalization.
“Nobody could think of an example of another patient with a more severe case,” he said.
While Jen Rohe was sedated, her blood pumped and oxygenated by a machine outside her body, she was placed on a heart transplant waiting list, her name listed as highest priority.
More than 100,000 people await donor organs every day in the United States, according to the United Network for Organ Sharing, the nonprofit that manages the nation’s organ transplant system. Those waiting for a heart transplant typically wait for about four months, according to the website.
Jennifer Rohe got lucky — if you can call it that; she waited 34 days, her husband said.
On Jan. 9, she received her heart transplant, and doctors anxiously monitored her, waiting to see her body would accept the donor heart as her own.
At first, things looked grim. Doctors broke the news that Jen Rohe had developed primary graft dysfunction — an initial stage of rejection that is the main cause of early mortality following a heart transplant.
It was a punch to the gut for her family, Chris Rohe said.
“We were so close to the end goal, and it wasn’t working,” he remembered.
But they didn’t give up. His wife had fought so hard; she wasn’t about to end her journey there.
After three days of treatment aimed at intervening, her body accepted the donor heart. Finally, on Jan. 15, her chest incision was closed.
‘Your babies need you’
Jennifer Rohe celebrated her first American Heart Association “Go Red for Women” day Feb. 2, donning a red T-shirt and dressing her son and daughter in the hue as well.
It was a cathartic moment for her, after months of uncertainty, setbacks and fear as doctors worked to keep her stable and then battled to help her body accept the donor heart.
Her recovery includes returning regularly to the hospital to make sure the donor heart is not showing signs of rejection, Chris Rohe said.
She looks forward to April 9, when her doctors are expected to lift restrictions keeping her from lifting things heavier than 5 pounds, she said.
All this time, that’s included Sienna.
“I won’t be able to lift my baby again until she is almost 5 months old,” Jen Rohe said. “The last time I lifted her was when she was just a few days old.”
Her experience has led her to encourage other expecting moms to take care of themselves, not to take symptoms too lightly.
And always, they must be their own advocates. Women should make sure their doctors listen to them if they’re worried about something happening to their bodies, she said.
It’s her kids she’s thinking of as she moves toward recovery.
“It’s easy to forget about yourself when you are taking care of your family, but your babies need you healthy,” she said.
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Greenfield native Jen Rohe earlier this year underwent a heart transplant after being diagnosed with postpartum cardiomyopathy, a rare type of heart failure that happens during childbirth or up to five months after.
She later realized she was exhibiting symptoms that she had chalked up to the third trimester of pregnancy.
• Feeling of heart racing or skipping beats (palpitations)
• Increased nighttime urination (nocturia)
• Shortness of breath with activity and when lying flat
• Swelling of the ankles
• Swollen neck veins
• Low blood pressure, or it may drop when standing up.