NEW ORLEANS (WVUE) - In a letter, you can put into words what you feel in your heart. Bethe Wood wrote letters and emails to her three little girls just after learning her heart had stopped working.
“I gave birth to your beautiful sisters and went into heart failure - a condition known as peripartum cardiomyopathy,” Wood wrote.
Wood found out she was pregnant with twins in September 2017. Things seemed fine until the last trimester of her pregnancy.
“I was gaining a lot of weight. I would gain 20 pounds a week, 30 pounds a week,” Wood said.
Despite the dramatic weight gain, swelling and loss of energy, Wood gave birth to two healthy girls: Marley and Milani. But while she was in the hospital, she kept insisting something was wrong.
“I could barely hold them without falling asleep in the hospital. I dropped them a couple times," she said.
Wood said doctors and nurses wrote her complaints off as common pregnancy and postpartum symptoms and sent her home.
“I was depressed. I felt isolated, I felt like a bad mother. I felt like I was crazy,” Wood said.
While this should have been a precious time to bond with her newborns, she struggled to care for them. She couldn’t catch her breath walking, sitting, laying down - nothing helped. So she finally rushed herself to the emergency room.
“The doctor came in she said, ‘We have bad news.' I just kept saying, ‘Don’t let me die, I have babies, I have babies,’” said Wood.
At 33, doctors told her that her heart was failing and re-admitted Wood into the hospital. Her diagnosis: peripartum cardiomyopathy, or PPCM.
“I would have died in my sleep at some point… I just knew something was wrong and I was going to keep going back to the E.R. until some doctor listened to me,” she said.
Doctors didn’t know if she’d make it back home to her family, so she began to write the letters.
“Being admitted in the hospital away from you and my newborn babies was the hardest thing I’ve ever endured…" she wrote.
She said it was a dark time.
“I wanted them to remember me and honestly felt like I was going to die,” Wood said.
Dr. Dennis McNamara is the co-director of the peripartum cardiomyopathy network. He says the biggest problem surrounding PPCM is the lack of awareness of the condition among medical providers.
“No one expects a young woman in her 20s, 30s, 40s to be presenting with a heart condition at a time that should be a wonderful event - the birth of their child. It’s unexpected, and symptoms can be quite subtle,” McNamara said.
The condition impacts nearly one in 2,000 women who give birth every year. While it can be genetic, doctors say it can also develop in any pregnant woman, and tends to show up more in black women.
“It’s sad to say, but it’s an important issue right now because the U.S. is the only developed country where maternal mortality is actually increasing, and there’s a big effort now to find out why that is and how that can be changed,” McNamara said.
The tricky thing is that the symptoms of PPCM mimic those experienced during pregnancy and after delivery. McNamara says that’s why women themselves are their best advocate. If a woman experiences excessive swelling, shortness of breath, difficulty breathing or heart palpitations, she should go to the doctor asking specifically about her heart.
McNamara says the test to confirm PPCM is relatively easy with a non-invasive echocardiogram. And doctors say once it’s diagnosed early, it’s easier to treat. McNamara says they continue to make medical providers more aware.
“We are getting better. People are picking up and are more aware of the illness. It’s relatively easy to diagnose if you think of it. The important thing is to think of it,” he said.
Wood is home again with her family, but her life is different. She’s working to strengthen her heart, seeing a cardiologist regularly and taking medication. But she says she still regrets not being there for her twins.
“I missed out on the first weeks of their life. I feel like I had no bond with them. I was basically robbed of my newborn experience,” said Wood.
That "mom guilt" she says is growing even stronger now that the twins' first birthday is coming up.
“That’s something I actually fear because it’s going to bring me back to what happened. I should be happy. My oldest - I love her birthday, I think about May, I get warm sensations, I get happy. But when I think about June, it’s completely opposite, it’s like the worst month of the year for me,” said Wood.
Faced with death, Wood says she battles her fears every day.
“I’m going to have to explain to them this is what almost happened because I was pregnant with you, and I don’t want them to feel responsible,” she said.
She’s choosing instead to pour her love and energy into her health and children instead of letters to remember her by.
“I would give up my life if I had to. It would have been worth it… I love being your mom, I love watching you grow. I love you, you are so perfect,” she said.
McNamara says there are women whose cases of PPCM are not caught early enough, which results in the mother needing a transplant or death.
But for those cases that are caught early, roughly 70 percent of those women have their heart function return to normal over the course of a year.