28 Hours Filled With Love and Eternity Filled With Joy

“Parents need information, resources, advocacy and appropriate references from the minute they receive the diagnosis.”

The Smith family: Henry, Cyprian (standing), Abraham, Andrew (Dad), Felicity (standing), Jacquelyn (Mom) holding Gemma, Lucy and Cecilia (standing).
The Smith family: Henry, Cyprian (standing), Abraham, Andrew (Dad), Felicity (standing), Jacquelyn (Mom) holding Gemma, Lucy and Cecilia (standing). (photo: Photo by Emily Clark)

A miracle took place quietly in Pennsylvania last week: Bella Santorum celebrated her 12th birthday.

Photos of Bella — at her First Communion with her father, former U.S. Sen. Rick Santorum; with her mom and her grandmother, her siblings and siblings-in-law; even a shot of her in the pool — were posted to her mother Karen’s Facebook page Wednesday.

“Bella’s birthday is an occasion to pause and think about the beauty and miracle in every life,” her mother wrote. “God is so good and He has blessed our family with an angel — a treasure from heaven!”

Bella’s birthday is big news because she was born with Trisomy 18, a rare genetic disorder characterized by three copies of chromosome 18 instead of two. Many babies with the disorder die before they are born. Others die during the birth process or shortly after. The unluckiest among them are aborted or have care withheld at birth. Few survive and thrive as well as Bella has.

According to the organization Trisomy18.org, some patients — all women, who have a higher survival rate with the disorder — are living to their 20s and 30s. But that is certainly not always the case, and expectant parents who receive the diagnosis for their child are uniformly offered the option to “terminate” the pregnancy.

When abortion was suggested to Jacquelyn and Andrew Smith at the 20-week ultrasound for their seventh child, Jacquelyn politely told the doctor, “Ma’am, in this family we deliver our babies.”

Her husband was less diplomatic.

“We don’t kill our babies,” Andrew said in that cramped ultrasound room with his wife, their six children and “Baby Goldbug” on the ultrasound screen.

The couple were quick to find a new doctor.

Trisomy 18 occurs once in every 2,500 pregnancies, but just once in every 6,000 live births. Second- and third-trimester stillbirths, and abortions, account for the discrepancy.

The Smiths, who live outside of Dallas, were aware of Trisomy 18 from a Facebook group Jacquelyn had followed years before but they were not sure what it could mean for their baby. The doctor who spoke to the couple about abortion also raised the issue of “comfort care” to keep the baby pain-free after birth and until death.

“We were not ready to discuss comfort care because we didn’t know what we were dealing with yet,” Jacquelyn said. “Trisomy 18 doesn’t kill babies; it’s the birth defects it can cause that can be fatal. But until the child is born, you don’t know what the challenges will be.”

The Smiths are devout Catholics and passionately pro-life — Jacquelyn is the Youth for Life Director for the Respect Life Ministry in the Diocese of Dallas — so they knew they had options other than abortion or comfort care. But parents who find themselves at the mercy of our throwaway culture might be led to believe abortion is their only choice.

“The pro-abortion medical community takes that moment of being scared and says, ‘Act now. Terminate,’” she said. “I was planning on a healthy baby, and I wasn’t going to have a healthy baby. It was hard and I had to process that. Then I had to prepare for the baby I was having.”

On the website of the Silent No More Awareness Campaign there are more than a dozen testimonies from women who were pressured to abort because of fetal anomaly. The similarities in their stories are striking.

Hemda in Georgia: “I was told that due to taking a blood thinner called Coumadin, the doctors thought it would be best if I had an abortion.”

Minda in Maryland: “Our child had been diagnosed with a profound cystic hygroma. We were told, quite matter-of-factly that there are no live births of children with this diagnosis.”

Amey in Louisiana: “Upon hearing the diagnosis of anencephaly, my ex-husband and I stayed calm and made the appropriate medical decision, or so I thought.”

These testimonies show that the default setting for medical professionals is to counsel abortion at the moment of diagnosis, before mothers and couples have a chance to process the news and decide, like Jacquelyn and Andrew did, to accept that God was in charge and to plan for this new future.

Two weeks after the ultrasound that indicated a problem, Jacquelyn underwent amniocentesis, a test that can detect chromosomal abnormalities in amniotic fluid. The amnio revealed that the baby had complete Trisomy 18 and a ventricular septal defect, a hole in the heart that’s common in these babies.

But it also revealed something “Baby Goldbug” had been hiding — Jacquelyn was pregnant with a girl. The name Gemma Perpetua had already been picked out but after someone gave the family a relic of St. Gianna Molla, the patron saint of pregnant women, they added her name, too. And a gender reveal scavenger hunt leading to a cache of pink cookies was planned for the brothers and sisters of Gemma Gianna Perpetua Smith.

“From the beginning, we celebrated Gemma as a member of our family,” Jacquelyn said.


Finding Help for the Journey

The Smiths got in touch with an organization called Be Not Afraid, a Catholic nonprofit that works with parents whose babies have received life-limiting diagnoses, including Trisomy 18.

Tracy Winsor, co-founder and program director for Be Not Afraid, said the organization was founded 12 years ago and has just celebrated the birth of its 200th baby.

“Parents need information, resources, advocacy and appropriate references from the minute they receive the diagnosis,” she said. “We work with them to develop a birth plan and we follow up with them until one year after the birth.”

Winsor said abortion is not the only hurdle babies have to overcome after receiving a prenatal diagnosis.

“The second threat is the withdrawal or withholding of care after birth,” she said. Parents are often talked into agreeing to withhold care before their children are born and the extent of their illnesses known.

To ensure babies receive the care to which they are entitled, Be Not Afraid worked with the National Catholic Bioethics Center to develop a document that parents can present to hospitals where their children will be born.

“Catholic ethics stipulate that you evaluate the living child,” Winsor said. “No one should be limiting care before birth.”

The Smiths and their advocates at Be Not Afraid worked out a birth plan for Gemma that included every eventuality, including heart surgery at Children’s Medical Center in Dallas if Gemma was up to it.

That turned out not to be.

Jacquelyn’s doctors determined that a cesarean section delivery was the safest for Gemma, so scheduled it for Feb. 4. But after an ultrasound on Jan. 31, the Smiths were sent to the hospital.

Gemma was born at 2:30 p.m. Andrew baptized her immediately and then she was taken to the neonatal intensive care unit.

Her kidneys, and one of her lungs, were not functioning. Her overall heart function was not what it should be. Andrew raced home to get the rest of the children. The hospital had agreed to let them all in if death appeared imminent although there was some last-minute resistance from the staff. A family picture was finally taken at midnight.

“I was the first to hold her,” Jacquelyn said. Eventually all of Gemma’s siblings had their moment with their baby sister.

Father Christopher Andrew of St. Basil the Great Byzantine Catholic Church confirmed Gemma in the faith and gave her First Communion, placing drops of consecrated wine on her tongue and giving the rest to Jacquelyn. Draped in a white gown provided by Be Not Afraid, Gemma was also given the sacrament of anointing of the sick.

Gemma was hooked up to a ventilator so her parents did not know the exact moment she passed. But they are thankful that her 28 hours were filled with love and care.

Jacquelyn said her advice to other moms facing a serious prenatal diagnosis would be never to give up hope.

“Until the child is born, you can’t know what the medical challenges are,” she said. “Enjoy the time you have her in your belly. Research like crazy. And be ready to be a mama bear.”