Gillian De Souza holds her baby Jayla. Doctors said the newborn probably wouldn't survive long after birth, but her parents are thankful for the ten months they had with their daughter.

Gillian De Souza holds her baby Jayla. Doctors said the newborn probably wouldn't survive long after birth, but her parents are thankful for the ten months they had with their daughter.

Nothing could have prepared Gillian DeSouza for the news she would receive during what was supposed to have been a routine pregnancy care check-up in June of 2008. At the 20th week in her pregnancy, the doctor told Gillian and her husband, Jason DeSouza, that their unborn child had a rare anomaly called “Trisomy X.” Commonly referred to as Triple X, this syndrome is characterized by an extra “X” chromosome in each cell of a female human and is estimated to occur in one for every 1,000 births.

After the initial amniocentesis, more tests were performed to get a better picture of the severity of the baby’s prognosis. With the help of full-anatomy ultrasounds, it was discovered that the baby was afflicted not only with triple X syndrome, but also with a serious congenital heart defect that would inevitably lead to an early death.

Initially, the DeSouza baby was thought to have Down’s syndrome or spina bifida, because the medical professionals noticed on the ultrasounds that the baby’s neck was thicker than that of a healthy baby. When further tests confirmed the triple X diagnosis, the DeSouzas were immediately presented with the decision to terminate.

“Right away, the doctor told me that I had up to 24 weeks’ gestation to decide if I wanted to terminate the pregnancy,” Gillian recalled. “When he could see that I wasn’t responding to the offer, he made a follow-up appointment at 28 weeks’ gestation.”

The doctors presented the DeSouzas with studies showing that the chances were slim that their child would live to be five years old. “All of the (medical professionals) told me I should terminate – they said it was a lot of work and that it takes a toll on the mother and on the baby and that the baby wouldn’t have long to live anyways.”

It was at this point that the couple sought opinions outside of the medical community. Being committed Catholics, they wanted to know where they stood morally with regard to their church’s teaching.

After conflicting feedback and having been told by several “Catholic” advisers that it would be “perfectly acceptable to terminate the pregnancy,” the DeSouzas were still not convinced that doing so was the right choice. “I didn’t feel right when (a certain priest) told me about it; it still didn’t make any sense to me. I mean, I know she wasn’t going to be given a lot of time, but she still got 10 months and she probably could have had longer.”

Gillian’s parents then put the couple in touch with Suresh Dominic of Gethsemane Ministries, a lay Catholic movement in Toronto, who then in turn connected them with Monsignor Ambrose Sheehy of Blessed Trinity Parish in Toronto and a retired doctor, bioethicist Dr. John Shea, who also serves as medical adviser to Campaign Life Coalition.

“I remember Gillian saying that she would go to the Pope to find out the truth if she had to do so,” Dominic recalled. “She wanted to know the whole truth of what the church taught, at any cost.”

Thanks to the help of people like Dominic and Sheehy, the DeSouzas chose life for their baby and didn’t look back, though the coming months brought much suffering. “I wanted to give her a chance. I wanted to have the memories that I do have of her. Had I terminated, I never would have had any memories,” Gillian explained.

On Oct. 30, 2008, a full-term – though tiny – Jayla DeSouza came into the world. Jayla, which means “special one,” lived 10 short months on this earth, but her little life blazed an unforgettable trail in the hearts of her family members and in the hearts of all of those who came into contact with her.

After Gillian gave birth to her tiny five-pound little girl at Toronto’s Mount Sinai hospital, she barely got a glimpse of her daughter before she was whisked away to Toronto Sick Kids Hospital, where she would be placed in critical care and undergo an open-heart surgery at only five days old. Gillian checked herself out of Mount Sinai as soon as the medical staff would allow it and headed to Sick Kids, where she would keep vigil day and night at her child’s side.

Almost two months and a bout of meningitis later, baby Jayla was deemed stable enough to go home with her family.

On the evening of Dec. 19, 2008, Gillian was told that she and Jayla had to leave the hospital. In recalling the details of their discharge that evening, Gillian is still puzzled as to why the medical staff were so adamant in sending them home in not-so-ideal circumstances. “They ordered a cab for us and sent us home in the middle of a pretty serious winter storm,” she said. “We were already nervous enough being at home with a baby that required a considerable amount of care, but now we were being asked to leave in a cab, in the dark, in a snowstorm. We were really nervous.”

Once they were home, however, Gillian admitted that it felt good to be there. Up until this point, Jade, Jayla’s four-year old sister, had come to the hospital every day with her mother and father to visit her sister and to play at the hospital’s play park. But now, she found herself living under the same roof as her little sister for the first time and she, like everyone else, needed some time to adjust to the level of care her sister required.

“Life was not normal during this time, but still, time seems to have flown by as there were always people in the house to meet Jayla’s many medical needs,” said Gillian. Not only had the DeSouza family heroically chosen to bring Jayla into the world knowing that they would be required to make many sacrifices as a family, but even more than this, they made sure that their daughter received nothing but the best care that was available to them. Gillian wanted Jayla to experience the highest quality of life possible given her daughter’s circumstances.

Gillian and Jason arranged for visits from infant development workers, hearing teachers (treating meningitis had diminished baby Jayla’s hearing) and an audio-visual teacher, not to mention frequent trips to the occupational therapist.

After just under five months of care at home, it came time for the second of the three heart surgeries as had been predetermined at the time of Jayla’s birth. Though the open-heart surgery itself was successful, Jayla’s chest had to remain open, leaving her little beating heart exposed for nearly two weeks so that the excess fluid could drain and the swelling could go down.

Unable to hold Jayla for a month in all, Gillian recalls this period as being extremely difficult. “I had been so used to holding her whenever I wanted. I mean, they let me hold her hand, but I wasn’t able to pick her up and hold her close to me.”

This healing process was much more strenuous than the first, as it was characterized by repeated returns downstairs to critical care for ventilation, leaving the DeSouza family feeling dizzy from the roller-coaster ride that was the suffering of their “special one.”

Finally, at the end of August 2009, Jayla was allowed to go home with her family. On Sept. 21, just under three weeks later, Jayla passed away at home.

What began as a sad story ended as a story of hope and healing. The DeSouza family not only found the strength to bring Jayla into the world knowing that her life would be a short one filled with much pain, but they were exposed to a surprising amount of love that came from beyond them. Love like this counteracts a culture that is bent on eliminating sacrificial, self-forgetting love.

Among the flowers and baby paraphernalia adorning the change table upon which Jayla was lain at her wake, Gillian and Jason chose to display the framed “love story”  surrounding Jayla’s birth and battle throughout her short time on earth as published at in March 2009.

It is evident that their love, which “to the world is folly,” has borne fruit in their lives. “I find that I have a lot more compassion for those who are suffering, particularly for parents of sick children,” Gillian reflected. “Jayla kicked me so hard during the pregnancy that I knew she was a pretty strong baby. She kicked me harder and earlier than my other daughter. I knew she was really strong and she proved that from the beginning … if I would have chosen to terminate, I would have never had the chance to know her.”