By Elena Perri • Posted July 31, 2013

This is a story about love. The love for a son and the love for a little brother. This is also a story about how the love for a child can inspire and transform people.

This story is about Sean Vincent Luna.

 

***

 

Sean’s parents, Tony and Anne Luna, had already been blessed with three children, Luke Aedan, 7, Olivia Rose, 5, and Maggie Grace, 2. So when Tony and Anne learned they were expecting their fourth child, they looked forward to preparing for the new addition to their family.

This was the first time the couple decided to learn the gender of their baby, and at the 20-week ultrasound, they found out they were having another boy. After three previous pregnancies, ultrasounds were routine experiences for them.

This ultrasound, however, was a bit different.

“You look at the ultrasound screen, and you’re not sure what you’re looking at,” Anne said. “This time I remember a few questions came to mind as I was looking at his anatomy, in particular his heart. I remember distinctly in our last pregnancy being able to see all four chambers and thinking how cool that was.”

[hotblock]

While she noticed that difference in the baby’s heart, the ultrasound technician didn’t say anything, and Anne and Tony assumed everything was fine.

A week later, Anne noticed that she missed a voicemail message from her obstetrician on her cell phone.

The doctor called again while they were taking Olivia to her dance class. “We were on the cell phone together listening to the doctor telling us things in very dry, clinical medical language that was very difficult to understand, especially over a cell phone with two people trying to hear,” Anne said. “We were just stunned and terrified.”

Tony and Anne went in for a follow-up ultrasound where they learned that Sean had several indicators for Trisomy 18, a genetic disorder where a person is born with an extra 18^th chromosome. According to the Trisomy18.org, web site, the genetic disorder occurs in about 1 out of every 2,500 pregnancies in the United States.

Although some people with the condition live into their 20s and 30s, the mortality rate is high for children with Trisomy 18, either before they are born or soon after.

“When the doctor said Trisomy 18 it was just like we were hit with a ton of bricks,” Tony said. “We knew the gravity of it right away.”

The couple, members of St. Isidore Parish in Quakertown, was familiar with Trisomy 18 because of former Sen. Rick Santorum’s campaign to become the Republican presidential nominee last year. The candidate left the campaign trail last April when his youngest daughter Bella, who was born with the disorder, was hospitalized.

“He became almost like a heroic figure to us as we found out about our son,” Tony said. “It was like God was showing us that somebody else is getting through this and you’re certainly not alone.”

 

“What do you want to do next?”

While Anne’s doctors thought that Sean had indicators for Trisomy 18, the diagnosis could not be confirmed without amniocentesis, a procedure where amniotic fluid is drawn from the amniotic sac that surrounds the baby.

“We wrestled with doing it because of the risk,” Anne said. The doctors were “pretty sure there was something genetically severe going on, and they needed to know what it (the diagnosis) was so they could come up with the best action plan to care for him when he was born.”

Tony and Anne knew that Sean might need heart surgery or other surgeries immediately after he was born to resolve the medical problems he had.

After the Trisomy 18 diagnosis was confirmed through amniocentesis, the doctors asked the couple, “What do you want to do next?” In other words, “Do you want to terminate the pregnancy?”

“Although we were dazed and confused, somewhere we found the strength to say that is not an option,” Anne said. “We were asked at least twice by two different doctors over a couple of ultrasounds. They all seemed a little surprised that we were going forward, but they were supportive.”

The Lunas researched Trisomy 18 on the Internet and learned that more than 75 percent of parents who receive this diagnosis decide to abort the pregnancy.

Anne read stories online about couples who chose to continue their pregnancy and noticed they were often people of faith. “Their journey of faith came through so clearly and how much they grew in love for each other and in love for God through the experience,” Anne said. “That gave me some hope that what we were doing – as painful as it was – wasn’t going to be in vain.”

 

Telling their children

Another challenge they faced was how to tell their young children about Sean and his condition. Anne, who has a master’s degree in education, explained to her children how chromosomes help define a person’s physical characteristics such as eye color and height.

She then told them that sometimes there is an extra chromosome that “confuses the body and the body can become very sick.” Anne also reassured the kids that their chromosomes were fine and would not make them sick.

From a Catholic faith perspective, Tony wanted his children to know that “Jesus loves all children, regardless of the circumstances of their birth. Sometimes He puts people on earth – doctors, scientists and nurses – to help cure sickness, and sometimes He needs to do it Himself.”

Tony also told them that Sean might go to heaven “before we ever get the chance to meet him. We simply don’t know, and all we can do is pray.”

Prayer was a source of comfort for the couple and their children. Luke, Olivia and Maggie would pray for their little brother every night.

Tony said he and Anne prayed they would get to meet Sean and that “he would be healed in this lifetime, or if it be God’s will, in the next life with Jesus in heaven.”

 

Sean’s arrival

The Lunas said both prayers were answered on April 23, 2012 when Anne delivered Sean Vincent at 32 weeks. She gave birth via C-section, and their pastor, Father Fred Riegler, was in the operating room and immediately baptized Sean.

While Sean only lived for a few hours, his older brother and sisters had the chance to meet him in the hospital. Tony explained that one of the doctors strongly urged him to ask his children to leave the room because she thought it was better to protect them from seeing their dying brother.
He told the doctor: “As their father, I know my children want to meet their baby brother, and I believe they will be fine.”
Luke then had the chance to hold Sean on his lap. “He kissed his baby brother, blessed him with holy water and held him close,” Tony said. “Then he looked up at me and said, ‘Daddy, I know Sean is dying, but he is such a cutie and I could hold him forever.’”

Tony later told Luke and Olivia that their brother had passed away. “Luke immediately asked me if we were going to bring Sean home,” he said. “Olivia quickly added, ‘Daddy, all children are supposed to come home.’”

A few days later, as Tony and Anne prepared for their son’s funeral Mass, Tony said he realized that Luke and Olivia were right: All children are supposed to come home. Tony wrote in his eulogy: “Sean Vincent did come home — he went home to loving arms of Our Lord — where God willing, we will meet him again someday.”

Sharing Sean’s story

A few months before they learned of Sean’s diagnosis, the Lunas had planned to host a “Cat.Chat” concert at their parish. Gerald and Denise Montpetit and their family perform the concerts that are geared to younger children and include songs and performances that incorporate Catholic teachings and God’s Word.

When the Lunas initially e-mailed Gerald and Denise, they weren’t going to be traveling to Pennsylvania for a few years. But when their plans changed they contacted Tony and Anne about hosting a concert at St. Isidore’s in May 2012. With friends and fellow parishioners helping to promote the event, more than 275 people attended the concert, which was dedicated to Sean and all mothers and their children.

“The concert brought us so much joy,” Anne said. “It was such a light at such a dark time for us, especially for our kids, who love the Cat.Chat music. It gave them something to smile about.”

In addition to dedicating the concert to their son, Tony and Anne shared their family’s story through journal entries on the CaringBridge web site and with their parish community.

The couple, who have been married 13 years, later learned that their experience with Sean and their witness of living the Catholic faith had touched many people.

Tony recalled a woman telling them, “‘You have no idea what your journey is doing for us; it lifted me and my husband up. There was a point where we thought about leaving the Church, and your story has given us hope that there are people of faith around us.’”

He added: “I can’t take any credit for that woman’s heart being touched by our story. All I can say is the Holy Spirit is alive and well.”

Unbeknownst to Tony and Anne, a family member who teaches at a Lutheran girls high school was reading the couple’s journal entries to her students every week. Anne said the teacher was sharing their story because she wanted “these young ladies to know that the faith we’re teaching in the classroom is real.’”

Following the Cat.Chat concert Anne said a mom in the parish was inspired by Sean to organize a Vacation Bible School, which was held at St. Isidore’s last summer. “We had 70 kids in VacationBibleSchool,” she said. “They had an awesome time.”

 

The power of saying yes

These positive experiences happened because Tony and Anne decided to follow their pro-life convictions and proceed with the pregnancy.

“I’m convinced that we did nothing more than say yes to allowing our child to be born — however God was going to have him born,” Tony said. “As soon as we said yes, I believe God and the Holy Spirit took care of everything else – from giving us strength, to giving our kids strength, to touching and changing the hearts and minds of people.”

Although they suffered the loss of their son, they are grateful that Sean’s short life had a positive impact on others. “I look back with a little bit of sadness but so much more joy, knowing how much his life meant to so many people,” Anne said.

Anne is also grateful for the support she received from family, friends and fellow parishioners.

“When I was pregnant with all of my babies, I couldn’t imagine going through an entire pregnancy and then going home without a baby,” she said. “I thought that would probably be something I couldn’t survive. When I look back on it, I don’t know how I survived. But God will hold you up and people around you will hold you up. There were graces all along the way.”