Kristen Terlizzi had no idea that maternal mortality was an issue in the United States until she almost lost her own life after she delivered her son, Leo.
“I had always focused on my baby’s health,” Terlizzi, 35, tells PEOPLE. “It was scary to realize that I was in danger as well.”
Since 1990, the maternal mortality ratio in the U.S. has more than doubled, according to the Society for Maternal-Fetal Medicine, with an estimated 700 to 900 women dying from pregnancy or childbirth related causes each year.
NPR reports that American women are more than three times as likely as Canadian women to die in the maternal period (defined by the Centers for Disease Control as the start of pregnancy to one year after delivery or termination), and more than six times as likely to die as Scandinavians.
Dr. Mary D’Alton, chair of OB-GYN at New York-Presbyterian/Columbia University Medical Center, says that although “maternal mortality in this country is very rare,” there is some data to suggest that the rate is going up.
At 28 weeks pregnant, Terlizzi was told she had placenta accreta, a life-threatening condition where the placenta attaches itself too deeply into the wall of the uterus.
“This can cause horrendous, significant bleeding,” says D’Alton. Doctors can detect the condition on an ultrasound around 20 weeks.
The condition, according to D’Alton, can occur from repeated C-sections. Terlizzi, who delivered her first child, Everett, in 2014, via a C-section, had no idea that this was ever a risk. While she tried to enjoy her pregnancy, she knew she wouldn’t know bad her condition really was until the delivery.
As the weeks went on, she says she felt healthy, but her situation continued to become more dire. They were no longer able to see a separation between her placenta, her uterus and her bladder. At 32 weeks, the invasion was so severe that was admitted to the hospital at Stanford University.
“It was the safest place for me,” she says. “I tried to spend those last few weeks of being pregnant appreciating that I had this life growing inside of me. I packed all of my maternity clothes to go into the hospital. I didn’t wear gowns.”
Her husband, Jeff, whom she met at work, was by her side every day.
On July 16, 2014, at 33 weeks and six days pregnant, Terlizzi delivered Leo. While he was healthy — but six weeks premature — she was far from being in the clear.
“For me, it was conflicting emotions,” says Jeff. “Here’s my son Leo being born, which is amazing, but I didn’t know if I should cry or be happy. It was a really tough scenario.”
After her delivery, Terlizzi was put under general anesthesia so they could access the damage caused by her condition. When they went in, it was much worse than they had expected.
The couple was told that surgery to remove the placenta was too risky. They decided to leave it in place and closed her up.
“I was shocked,” says Terlizzi. “I knew that this wasn’t good. The [doctors] hoped that whatever happened would be better than the surgery, which was now the last resort.”
For the next three days, Terlizzi wasn’t able to see Leo because they were in different areas of the hospital, but she was constantly reassured that he was doing well. Jeff would bring her baby blankets that Leo slept with in the NICU so she could then sleep with them in the ICU. It was a small, but important way for her to stay connected to him. When they finally did meet, she remembers “being amazed by how perfect he was.”
Doctors then discovered that Terlizzi had developed a blood clotting infection so severe that they had to do the surgery.
“[Jeff] gave me a kiss and said, ‘Everything’s going to be great. We’re all waiting for you.’ ” she recalls.
During surgery, Terlizzi ended up needing 26 units of blood and had her uterus, cervix and appendix removed. They also had to operate on her bladder and ureter in order to remove the placenta.
Even after they successfully removed the placenta, she needed more blood transfusions in the ICU.
“It was such an emotional roller coaster,” she says, looking back on her journey. “We never expected to be in the hospital for over two months.”
After Terlizzi left the hospital, she wanted to educate others about placenta accreta.
“I couldn’t believe that a casarean is the most common surgery in the United States and no one is talking about [this condition],” she says. “On the one-year anniversary of my surgery, I wanted to do something to commemorate it and give back to future patients.”
While donating blood, she told the nurses and other people nearby her story. The next thing she knew she was being asked to come back and tell her story to medical students.
“It just snowballed from there,” she says.
While a cesarean can be a life-saving and necessary intervention for many pregnant moms, she wanted to inform women about the risks, so she co-founded the National Accreta Foundation, which has a mission to improve the outcomes for mothers and babies and reduce the incidence of accreta by safely reducing cesareans.
“They can deliver in what we call accreta centers, or expert centers across the country that have a significant experience with reducing blood loss and optimally treating placenta accreta,” she says.
“I’m so motivated to this work,”adds Terlizzi, who also wants to write a memoir about her experience. “My story is so hopeful because it shows how deadly pregnancy conditions can be survivable when hospitals prepare for them. When I learned about maternal mortality rates in this country, I was very compelled to take action. I had no idea that healthy American women were experiencing thing like this.”
D’Alton is also on a mission to lower the number of maternal deaths in this country and says that research is key to improving the outcome for mothers in the United States. She is the co-chair of the Safe Motherhood Initiative, which helps decrease preventable deaths related to childbirth.
This fall, New York will join a growing number of states that conduct formal reviews of every maternal death.
“I think that is a very big step forward,” D’Alton says. “The lessons that we learn from reviews can be turned back into better clinical practice.”