Jessica Capitani and her husband had been trying for two years to start a family without success, but just as she considered meeting with a fertility specialist, she discovered she was pregnant. The couple was thrilled at the impending arrival of their first child. Then midway through the second trimester, a diagnosis of Down syndrome flipped their world upside down.
“There was excitement around my 20-week ultrasound,” Capitani told Live Action News. “My mother and husband were in the room. I was expecting to learn the gender of my baby. Instead, the technician kept going in and out of the room. I didn’t think anything of it at first until we were directed to the doctor’s office.”
The couple was informed the ultrasound had shown evidence of a chromosomal abnormality. Stunned, Capitani didn’t quite understand what that meant. She recalled being given a box of tissues while the doctor explained she would need an amniocentesis to confirm the condition: Down syndrome. Because of the inherent risks involved with an amniocentesis, she preferred not to have the procedure done but reluctantly consented.
“I went home and researched everything I could about Down syndrome and learned there are three types,” Capitani said. “When the doctor called to tell me my baby was diagnosed with Trisomy 21, or Down syndrome, I realized he had no idea there were two other types. Doctors aren’t trained on Down syndrome.”
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Pressure to have an abortion
Because she was now at 21 weeks, the doctor told Capitani he’d schedule an immediate appointment for an abortion. Under Pennsylvania law, pregnancies can be terminated up to 24 weeks and she was approaching that mark.
Capitani said, “He wanted to connect me with a genetic counselor to discuss late-term abortion, but I wanted to meet with other specialists to get more information on hydrocephalus which [the baby] supposedly had as well. I later learned he did not have that disorder.”
She noticed her baby was now referred to as “a fetus” or “it,” as if the child she had yearned for was not a life to be valued. “Instead of being pregnant, I now had a diagnosis,” Capitani said. “As if I had a horrible cyst growing inside of me, they couldn’t wait to eradicate. There was that subtle pressure to have the abortion.”
Capitani struggled to process the emotions raging inside her. Her husband told her he’d support whatever she decided, but Capitani just felt more isolated. She had hoped he’d advocate for their child’s life.
“My husband felt it was my decision whether to go ahead with the abortion,” Capitani said. “I’d just sit and cry, questioning why I couldn’t go on like other people. It was such a scary place to be. Connecting with other women in an online group with similar situations as mine provided a lifeline.”
A life of love
As she felt her baby kicking and moving about, Capitani knew she couldn’t terminate her pregnancy and resume her life as if nothing ever happened. She would not have an abortion. Instead, she would meet this challenge head-on, with courage and fortitude.
“My doctor was very surprised when I chose not to keep the abortion appointment,” she explained. “In his mind, it was only the Amish community who held strict views about abortion. But how could I, in good consciousness, snuff out the life I felt growing inside me? How could any mother do that?”
Still, she kept second-guessing her decision to continue the pregnancy. But seeing her son’s face during a 4-dimensional ultrasound at 26 weeks renewed her determination to fight for him.
When Caden was a year old, Capitani collaborated with other mothers in her online community to author the book, “Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.” The book was initially self-published, then printed by Woodbine House in 2006. Two other books followed in 2009 and in 2016.
“The books are truly a work of love,” Capitani said. “As mothers, we established a deep connection through our collective experiences with medical professionals who failed us by employing a campaign of fear instead of providing options and support. So, we were convicted to illustrate the joys and blessings of raising children with Down syndrome.”
She is grateful that many women have found the messages hopeful and inspiring. One pregnant woman with a Down syndrome diagnosis for her baby asked Capitani if she could meet Caden so she could imagine how her baby might look. “She decided to continue her pregnancy, which was so rewarding,” Capitani said. “Of all the women I’ve spoken with, only one chose not to birth her baby, yet there’s been more positive outcomes because of the stories we’ve shared.”
These days, Capitani serves as chapter president of The Arc, and takes an active role in supporting the Down Syndrome Protection Act. The legislation would penalize doctors for performing abortions strictly based on a Down syndrome diagnosis. It’s a difficult undertaking, but Capitani isn’t deterred.
At 17, Caden has grown into a talented and athletic young man who loves sports and plays percussion in his high school band. He is fascinated by the 60s era, and seeks to project a slicked-back “Fonzi” style. Six years ago, he was featured as the Miracle Child for the Children’s Miracle Network.
“Caden is the catalyst that’s brought our families close, and I don’t think that would have happened otherwise,” she said. “While there are challenges, there are amazing blessings, too. When you make a choice based on love and not fear, things seem to work out.”