RESPECT LIFE MONTH

For one local family, a journey of prayer and trust following Down syndrome screening

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To commemorate Down Syndrome Awareness Month and Respect Life Month, both celebrated in October, Rhode Island Catholic interviewed a local Catholic family who received a prenatal screening test for Down syndrome during their first pregnancy. You can read more about their experience in Christina’s blog at www.catholicmomri.weebly.com.

NORTH KINGSTOWN — Christina and James Frye, like many young couples, were eager to start a family together. The North Kingstown couple met on a blind date in 2010 and, four years later, married at Holy Ghost Church on Federal Hill. Just over a year later, on Mother’s Day in 2015, they learned Christina was pregnant.

“It was wonderful. The beginning was like a dream. I took pictures every week of the belly,” she recalled.

Eager to know the sex of the baby, Christina went for a blood test at 12 weeks. Soon after, she and James received some news they didn’t expect.

“And that’s when we got the call that he had a nine out of 10 risk of having trisomy 21,” she said.

Trisomy 21, a form of Down syndrome, is the most common chromosomal condition in the United States. Children born with Down syndrome have a full or partial extra copy of chromosome 21 in their genes, which can lead to physical characteristics like low muscle tone, small stature and an upward slant to the eyes, as well as differences in cognitive development. Adults with Down syndrome have a wide range of abilities and physical traits.

Once identified during pregnancy only by a diagnostic test that sampled the amniotic fluid or placenta, Down syndrome can now be predicted as early as 10 weeks using a screening test. Blood tests, like the one Christina received, screen for the likelihood of Down syndrome and offer results like a “six out of 10” or “one out of 200” chance of a child having the condition. The Fryes’ test results, combined with an examination of the ultrasound image, offered a high likelihood their son would be born with Down syndrome.

“The first thing we said we would do is we need to pray together,” recalled James.

Like many parents before them, James and Christina were immediately thrown into a world of doctor’s appointments and online research as they learned as much as they could about having a child with Down syndrome. They chose to forego the diagnostic test that would confirm the results of the screening due to the one percent risk of miscarriage and met with a genetic counselor to discuss what to expect from the pregnancy ahead. Christina became upset when the counselor told her she had options, realizing the woman referred to the possibility of aborting the baby, an option she refused.

“I wish it was presented in a way with hope and not sadness. It’s the beginning” she said, remembering the attitudes of apology and despair exhibited by those she first interacted with upon learning the news.

According to Claudia Lowe, coordinator of the Down Syndrome Society of Rhode Island (DSSRI), this perspective of despair is not unusual among new parents and even medical professionals when discussing a prenatal screening or diagnosis of Down syndrome. While experiences vary by hospital and genetic counselor, medical professionals do not always have direct experience working with individuals with Down syndrome, and so, while they can offer medical advice during the course of the pregnancy, some may not be able to paint an accurate picture for the family of the experience of raising the child after birth.

“I feel like they get blinded by the science and, unfortunately, they can’t really give people information that’s going to be lifelong,” said Lowe. “You almost need to talk to a family with a baby that has Down syndrome, and that’s what we do here.”

Kevin Alviti, president of DSSRI, experienced this bias when he and his wife, Marianna, first learned their child would almost certainly have Down syndrome through a screening test. The genetic counselor they met with told the parents their daughter would be a burden on the family, would never be able to tell her parents she loved them and would likely need to be institutionalized.

“This is what he gave us. When you’re a scared parent and look across the room at a doctor, he knows more than I do, right? He has all the plaques on the wall. I left there a scared mess,” he recalled during a recent phone interview with Rhode Island Catholic.

Through educating himself and meeting with other parents of children with Down syndrome, Kevin eventually became comfortable with the idea of continuing the pregnancy and raising the child. Marianna gave birth to a healthy baby girl in 2014, and their daughter, Natalia, is now an active 3-year-old who goes to school and loves books and Minnie Mouse.

“The other day, about two weeks ago now, she looked at my wife and said I love you,” said Kevin. “Talk about a kick in the pants that that doctor told me my child would never tell me she loved me.”

Though some families in similar circumstances may consider abortion, Christina and James never saw that as an option for their child. They did experience similar fears to those of the Alvitis as they became aware of the many health and societal risks a child with Down syndrome might face. Individuals with Down syndrome are more likely to be born with heart defects and gastrointestinal tract abnormalities, and many still experience the stigma and lack of services faced by all people with intellectual disabilities.

The couple turned increasingly to their faith as the pregnancy went on, with Christina choosing to wear a Miraculous Medal and carrying a rosary with her to the regular checkups. Many people they knew promised to pray for the child, including their genetic counselor, who, after a rocky first meeting, told the couple she would be praying for them.

“I feel like I’m strong in my faith now,” said Christina. “Looking back, I loved God, but I didn’t think I was as strong as I was then.”

Joseph Salvatore Frye was born on December 31, 2015, at 1:35 p.m. Two weeks early and weighing 5 pounds 15 ounces, Joseph had been diagnosed with intrauterine growth restriction during the third trimester and underwent further medical tests when he was born but proved to have no long-term health concerns. He did not have Down syndrome.

His parents were relieved their son was born healthy and that the long and difficult pregnancy had come to a happy end. They were also glad he would not have to experience the prejudice often directed toward people with Down syndrome, but stressed his birth would have been considered a blessing for the family regardless of whether he was born with the condition. His health, and the continued health of Christina and the family, was their main concern as they offered up prayers of thanks for the birth of their son.

“The miracle is not that he did not have Down syndrome,” she said. “The miracle is that he’s alive.”

Christina now blogs about her experience and invites other women to share their stories at Catholic Mom Rhode Island, a website she founded to serve as an online community for local parents invested in their Catholic faith. She hopes her story will encourage others to rely on God’s grace though difficult parenting experiences and remember the unique child at the center of even the toughest pregnancies.

“I just want them to feel hope through all of life’s sufferings,” she said. “Try to make the best of every situation, lean on God and lean on the Blessed Mother.”

As for the Alviti family, whose daughter was born with Down syndrome, Kevin said that despite his continued worries about how society will respond to Natalia, he wouldn’t change her condition if he could. He recommended that families who have received a prenatal diagnosis of Down syndrome or are considering getting tested educate themselves on the experience of raising child with the condition and know how they will respond to the results of the test prior to receiving them.

He and Lowe also recommended that families reach out to the Down Syndrome Society of Rhode Island to be connected with other parents with similar experiences.

“She’s an amazing little girl and she’s brought so much joy to our family,” he said about his daughter, Natalia. “I couldn’t even imagine life without her.”

To learn more about The Down Syndrome Society of Rhode Island, visit

www.dssri.org.