MADISON, Wis. – On Dec. 13, 2022, at seven-and-a-half months pregnant, Susan Siegenthaler went to an emergency department in Madison.
She was an otherwise healthy 38-year-old, but her gut told her something was wrong. She was experiencing shortness of breath, a persistent cough and significantly swollen feet.
“It was hard because these symptoms looked like normal pregnancy symptoms,” Siegenthaler said. “But I knew this was something different.”
She turned out to be right. Her heart was failing and medical teams from multiple hospitals needed to work around the clock for the next eight weeks to save her and her unborn baby.
Following an electrocardiogram (EKG) ordered by her midwife in the emergency department, Siegenthaler was admitted to UnityPoint Health – Meriter Hospital.
She was diagnosed with dilated cardiomyopathy, a condition where the heart muscle is weak and enlarged and cannot pump enough blood to the rest of the body.
“Doctors told me my heart was only operating at 5 to 10% capacity,” she said. “I had no family history of heart issues, so I was stunned.”
In pregnancy, blood volume increases significantly and can strain the heart, and in rare cases, can create complications in the later months of pregnancy. In Susan’s case, the increased blood volume revealed a very serious underlying condition, where her heart was dilated, or double in size, which she likely had before pregnancy, according to Dr. Michael Beninati, maternal-fetal medicine specialist and critical care physician, UW Health, assistant professor of obstetrics and gynecology, University of Wisconsin School of Medicine and Public Health.
“I have never seen anything like this in my career,” he said. “We ran a lot of tests and had discussions on how best to treat them both. It was very challenging.”
It was a balancing act of how long to continue the pregnancy to benefit the baby while not putting Susan’s life at risk, he said. Her baby was not due until Feb. 2.
Given the severity and complexity of her condition, she was transferred to University Hospital in Madison on Dec. 22.
“We put together a huge team of experts at UW Health including surgeons, neonatologists, pediatricians, OB-GYNs, cardiologists, critical care teams, nurses and anesthesiologists to figure out what to do,” Beninati said. “At the end of this process around 30 doctors and dozens of nurses worked together to save Susan and her baby.”
Siegenthaler, at 34 weeks pregnant, gave birth to Stevie Leigh Siegenthaler via cesarean section in an operating room at University Hospital the day after Christmas.
Stevie was then transferred to the neonatal intensive care unit at American Family Children’s Hospital where she spent the first three weeks of her life. During that time Susan was at the adjacent University Hospital but nurses took her back and forth so she could bond with her baby. Her physicians even adjusted her heart medication to enable her to breastfeed briefly.
These visits were especially important to their family, as her husband, Kiel Siegenthaler, tested positive for COVID-19 on Christmas Day, she said.
“He couldn’t be there for the delivery or meet our daughter in person for 10 days,” Susan said.
On Jan. 16, Stevie was able to go home with her dad to their house in Cambridge, while Susan remained at University Hospital.
The heart failure physicians tried different medications and put in a support pump to decrease the stress on her heart, but nothing was working.
Heart failure in young individuals can be challenging because they are often not aware until another stressor causes the additional need for circulation and in this case, it was a pregnancy, according to Dr. Maryl Johnson, heart failure and transplant cardiologist, UW Health, and professor of medicine at the UW School of Medicine and Public Health.
“If a patient has weak heart muscles like in this case, we recommend against pregnancy because it increases the demand to provide blood to their own body and their babies,” she said.
“However, in Susan’s case no one was aware of her condition and when I met her in December it really was amazing how well she and her baby were doing despite how sick her heart was,” Johnson said. “The hope was that her heart could stabilize after the delivery but unfortunately that was not the case.”
Susan needed a heart transplant.
“It was surreal,” Susan said. “I went from being excited about having a baby for the first time to discovering I have heart failure to learning I needed a heart transplant to survive.”
On Jan. 19, she was listed for a heart transplant and because of the seriousness of her condition, she was at the top of the list. Eleven days later she got the call that a heart was available.
On the afternoon of Jan. 30, Dr. Yu Xia, cardiothoracic transplant surgeon, UW Health, assistant professor of surgery at the UW School of Medicine and Public Health, led a team into an operating room at University Hospital. Nine hours later in the early morning of Jan. 31, the surgery was a success and Susan had a new heart.
“We do not believe the pregnancy caused the heart failure, but it made it more clinically evident that there was an underlying condition,” Johnson said.
Underlying cardiovascular conditions revealed by pregnancy are the number one cause of maternal mortality in the United States, according to the Centers for Disease Control and Prevention.
This is a troubling trend, Beninati said.
“Thankfully our team of experts came together to ensure that Susan and Stevie had the best possible outcome,” he said “But this is changing the way we look at maternal-fetal medicine because this was not always the top cause of maternal mortality. We need to be on the lookout for these heart-related risk factors.”
Several months out from the transplant, Susan is doing well and starting to feel like herself again, she said. She is looking forward to spending more time outside with her family in the warmer weather and she goes to the UW Health cardiac rehabilitation center three times a week to regain strength.
“Stevie was my fourth pregnancy in the last six years, with the other three ending in miscarriages, so my journey to motherhood has not been easy,” she said. “That’s why I am forever grateful to the amazing nurses and doctors who helped me finally get to be a mom.”
Sunday, May 14, is Mother’s Day, which is almost six months to the day when Susan advocated for her health and will now celebrate her first Mother’s Day thanks to the gift of life from a stranger.
“I am so thankful for the donor and their family; this has given me a second chance at life,” she said. “I get to be Stevie’s mom.”