Fifteen weeks into her second pregnancy, Katrina Villegas and her husband learned their baby girl had trisomy 13, a chromosomal disorder that causes severe disabilities and is usually fatal.
"It’s really just a whirlwind situation for a few weeks," said Villegas, recalling how her baby's heart defects and other abnormalities began showing up on her ultrasounds. "We just tried to do as much research as we could about trisomy 13 and what that would mean for our daughter. At the end of the day we decided that we didn’t want her suffering, so we ended up inducing the pregnancy early."
Villegas, who contributes to the TODAY Parenting Team, recalls feeling blindsided when she had to sign paperwork for a "medical abortion" prior to her induction.
"I lost it because it wasn’t an abortion in my head," said Villegas. "This was a child that we wanted. We were making one of the hardest decisions you can make as a parent, which was to spare her pain."
What is 'termination for medical reasons'?
In the face of fetal abnormalities that will cause death or severe suffering, it's not uncommon for a expectant mother to choose a termination for medical reasons (TFMR). Though it's not an official medical term, online loss support groups and parents who have been through it coined the term to describe their unique experience. The American College of Obstetricians and Gynecologists has released an official statement explaining that in some cases, abortion is a medical necessity.
Still, parents who choose TFMR often feel weighed down by feelings of guilt or secrecy, unsure how to grieve the loss and caught between identifying with having had a miscarriage or an abortion. Some don't tell friends and family for fear of judgment. Some feel unwelcome in pregnancy loss support groups.
On August 8, 2017, Villegas gave birth to her daughter, April Rey Villegas, who lived for 11 minutes before passing away in her mom's arms.
"She held my hand pretty much the entire time," the Germantown, Maryland, mom recalled. "Everybody in the family that wanted to come meet April got to do so and have a few special moments with her."
Villegas, who blogs about her loss at Terminations Remembered, says making the decision to end a pregnancy for medical reasons was isolating.
"When you think about coping with grief, one of the things people need to do is be able to process and talk, especially to the people they love and care about," said Villegas. "But often in this situation, parents don’t tell the whole story and they don’t talk about it openly even to people in their close circle because of the fear of judgment."
A heartbreaking diagnosis, and a quest for answers
Wilmaris Soto-Ramos was 16 weeks into her first pregnancy when she received devastating news at an ultrasound appointment.
"Doctors came into the room and told me the extremities of our baby were really abnormal," Soto-Ramos told TODAY Parents. "Her feet were clubbed, her arms weren’t moving and she also had fluid in her brain."
Soto-Ramos and her partner were referred to a genetic counselor, who performed an amniocentesis, a procedure used to test for genetic abnormalities.
"In that amniocentesis they kind of found the same results," Soto-Ramos, who lives in Pawtucket, Rhode Island, shared. "The doctor looked at me and said, 'Most parents would terminate a pregnancy like this and you should, too,' which was really heartbreaking."
As she considered how to proceed with her own pregnancy, Soto-Ramos went on a quest for answers.
For the next five weeks Soto-Ramos visited specialists for more tests, until finally learning her daughter had a severe case of arthrogryposis, a rare genetic condition that affects the joints and muscles.
"Because it also affected her brain, she really wasn’t viable," explained Soto-Ramos. "If she was to live, she would be wheelchair bound. She wouldn’t be able to speak, talk, hear or eat. They also told me if I continued the pregnancy she would probably pass away regardless because of the fluid in her brain."
Soto-Ramos made the decision to end her pregnancy, allowing doctors to induce labor at 22 weeks gestation. On May 9, 2019, her daughter, Angelis Yawa Larbi, was delivered.
"She passed away in the birth canal as she was coming out," Soto-Ramos recalled. "It’s something I really struggled with because I'm somebody who is pro-choice and, for me, this was a very-much-wanted pregnancy."
How doctors approach TFMR
Dr. Christine Greves, an OB-GYN in Orlando, Florida, says it's the job of doctors to support, not judge, women who are faced with this devastating scenario.
"If a patient of mine was to come and talk to me about it, I would tell her there are different options and encourage her to find out more information," said Greves, who does not perform TFMR and typically refers patients to a maternal-fetal medicine specialist when abnormalities are detected in a pregnancy. "More knowledge can be helpful from the standpoint of providing peace with whatever decision they choose."
She said a doctor may suggest termination for medical reasons to a pregnant woman for two reasons: when a fetus is considered not viable due to a medical condition detected in utero or when a mother's life is at risk if she continues a pregnancy.
"When people get this sad news, their doctor tells them the possible outcome of carrying the pregnancy to term," explained Greves. "They explain what could happen — either fully delivering the baby and then having the baby pass away, or as far as the maternal indication goes, making sure the patient is aware they could die if they go through with the pregnancy."
Helping her family understand pregnancy loss
At the time of her daughter April's birth, Villegas' older daughter, Caroline, was two. Caroline asked to meet her baby sister after she was born, and has continued asking difficult questions about grief and loss in the years since her death. It's these conversations, combined with a desire to tell her 1-year-old son, William, about the sister that died before his birth, that led Villegas to write five children's books dealing with TFMR.
With titles like "Our Baby is Going to Die," and "The Baby Before You Died," the books explain both surgical termination and induction, and tackle difficult topics like expressing grief and remembering the baby who was lost.
A decision made out of love
Soto-Ramos says she's experienced isolation, even feeling excluded from some infant loss support groups because she chose to terminate her pregnancy. A licensed clinical social worker, Soto-Ramos is in the process of becoming a bereavement doula and hopes to help women cope with their grief and get the answers they need about their options.
"I found, especially for me being a woman of color, it was really difficult to get answers within the medical system and I had to go look for them, which was traumatizing on its own," said Soto-Ramos. "But I’m glad I did because had I listened to the first doctor who told me to terminate my pregnancy without knowing what was going on, I would have always wondered, 'What if?'"
"I love my daughter so much and so deeply and know my decision was out of love, not out of fear about something a doctor told me," Soto-Ramos added. "It was because I loved her and knew what was going on."
Soto-Ramos kept trying to have a child, and she was pregnant when she talked to TODAY Parents for this story. On October 4, she gave birth to a healthy baby girl.
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