Evan, with his twin sister Rileigh.
'A True Miracle Baby'
Maura Perry, in her office at the Shrine in Stockbridge.
By Felix Carroll (May 18, 2011)
Along a cavernous hallway within the National Shrine of The Divine Mercy are a set of offices within which one can easily find proof to the maxim that "everyone has a story."
Maura Perry, an accounting manager for the Marian Fathers of the Immaculate Conception, has a story. She turns on her smart phone, clicks a few buttons and calls up two images. One is of an 18-month-old boy named Evan, and the other is of his twin sister Rileigh.
"Evan is a true miracle baby," Maura said, referring to her grandnephew. "Look at him."
In the photo, he's wearing sunglasses and smiling.
"He loves his shades," said Maura. "He loves to have a good time. And that smile is 'Evan all the time'."
Evan is too young to know of those terrible days in the fragile early stages of his life. At 20 weeks gestation, an ultrasound revealed he had a terminal illness and would probably die at birth. His twin looked healthy.
"We expected a funeral for one baby and a baptism for another," said Maura.
They were told Evan likely had a genetic disorder called Trisomy 13, which involves multiple abnormalities, many of which are not compatible with life.
"It is very rare for a 'Trisomy 13' baby to survive beyond their first birthday," Maura said.
The testing continued. Clearly, Evan had two birth defects: hydronephrosis, which is a swelling of the kidneys due to a backup of urine, and clubfeet.
"They could see that his kidneys were too big for his belly," Maura said. "And they were concerned there may have been a heart issue, too."
The family had been here before. Evan and Rileigh's mother, Seonead, had a younger brother named Brendan who died from birth defects in 1987. Brendan lived for 14 months. The concern was that chromosomal defects were genetic.
Seonead and her husband Nick made haste to name their babies, and the family began to pray.
At 22 weeks, a cardiologist concluded that Evan's heart was fine. That was relief in a tense two weeks. After a third ultrasound at 28 weeks they concluded that Evan didn't have Trisomy 13. That was the breakthrough news the family had longed for. Evan had defects in his kidneys and feet, but nothing terminal.
Four weeks later, for completely unexpected reasons, Seonead had to end the pregnancy early. It wasn't because of Evan's difficulties. The reason was that Rileigh had stopped growing at four pounds. The babies were delivered five weeks early.
"Both began the thrive," Maura said. "Both went home at one week."
Evan has been undergoing extensive medical care. Doctors began a protracted procedure involving casts to straighten his feet. He remains "slightly pigeon-toed," said Maura, but his mobility is perfect.
He still needs prayers with regard to his kidney problems. His first surgery is this week. A second major kidney surgery is scheduled for this fall.
"There was a divine intervention with this baby," Maura says. "That initial diagnosis was so horrific. The whole family was already thinking the worst. His parents were already thinking that if Evan died, he would be buried beside his uncle. Hearing how bad they thought it was for Evan, they couldn't help but to think of Brendan and how it was as if they were getting that awful diagnosis all over again, 23 years later."
Just down the southern slope of the National Shrine of The Divine Mercy is the Marian Fathers' new Shrine of the Holy Innocents where people can have names etched onto glass tiles to memorialize deceased children. Maura said that when she first learned of this shrine she thought one thing — that looking upon the beautiful gifts the family has in Evan and Rileigh also conjures thoughts of the beautiful boy named Brendan whom she hopes will never be forgotten.
"Let me put it this way, I haven't done it yet, but I will be buying a memorial down in SOHI, " Maura said. "When I heard of the shrine of the holy innocents, I thought, 'Oh, yeah, that's where Brendan belongs.'"
She pulls up more photos of Evan and Rileigh. They are hugging each other. They are mugging for the camera.
"They are healthy, thriving, beautiful kids," Maura said. "Okay, I have bragging rights, but these two kids are special. Their parents are doing a great job raising them. They are happy, content, easy babies."
Let's all pray for Evan, Rileigh and their family.