Jeff and Lauren Schooler were already parents of three healthy sons when they learned they were pregnant two years ago. As the anatomy scan approached, the boys were hoping for a baby sister.
Two days before Thanksgiving 2016, Jeff, Lauren, and their sons went to the doctor’s office for the much-anticipated ultrasound where they would learn the gender of the baby, but soon something seemed wrong.
“The mood shifted instantly,” Lauren said. “We had been through this three different times and we realized something was different.”
Without saying anything, the ultrasound technician left the room. Another woman came in and asked if the boys could step into the hallway. By the time Jeff and Lauren left the room, their world had changed dramatically.
A baby girl, but…
The technician saw something on the ultrasound that made her think their baby girl had Down syndrome – yes, baby girl. They received no further details; they were only told they needed to meet with the doctor the next day.
Jeff, pale, sat slumped in a chair trying to compose himself. The children — Colin, Brennan, and Aaron — broke into a cacophony of questions, repeatedly asking what was wrong as they stared at their stunned parents.
Lauren and Jeff had to immediately make a decision. They were angry and confused, but they were also parents who had to summon their strength quickly. They didn’t have time to wallow.
“I just thought we have to set the stage right now for how we deal with this, because this is their example for the future,” Lauren said, “We explained everything we knew in that moment, which wasn’t much.”
The next day they learned their daughter did have Down syndrome, also known as Trisomy 21. This occurs when there are three copies of chromosome 21 instead of the usual two. While symptoms vary from child to child, Down syndrome is characterized by decreased mental and physical development.
Down syndrome also comes with an array of possible additional health conditions, from thyroid to skeletal problems. Hannah, the Schoolers learned, also had CHD: congenital heart disease. Her type of CHD is called complete atrioventricular canal in which oxygen-rich and oxygen-depleted blood mix in a large hole in Hannah’s heart.
The valves of her heart also didn’t form correctly, causing too much blood to flow to the lungs, which could cause permanent damage to the lungs and heart and eventually result in death. In addition to this, Hannah also had a rare form of atresia, a gastrointestinal issue where there is a large gap between the ends of her esophagus.
Her condition was so rare that most doctors and hospitals have never actually seen it in a patient, which made it difficult to treat. Yet, the doctor was optimistic. He told them everything could be fixed – with surgery.
‘Heartbroken, but overjoyed’
They decided early to “name her and claim her,” as Lauren said. They chose “Hannah,” which means “grace.”
“She’s the gift we don’t deserve,” said Lauren.
The couple learned all they could about Down syndrome, CHD, and atresia.
“From that point forward, we had a job,” Lauren said, “and that was to get ready and to educate.”
They taught their sons about their sister’s diagnosis and prognosis. They traveled from Richmond to Charlottesville to Boston seeking the best care for Hannah. Things didn’t seem quite so scary once they understood with what they were dealing.
Jeff admitted he “was heartbroken, but as I learned more and understood more, I became overjoyed. I knew the road for my daughter would be tough, but I would go with her.”
The Schoolers’ 5-pound, 5-ounce gift was born at Richmond’s VCU Medical Center March 28, 2017. Hannah had five life-saving surgeries in her first year. At less than a week old, she had a gastrostomy tube placed at VCU. Less than two weeks later, she had another surgery at VCU to repair an intestinal obstruction.
At 5 months old, she had open-heart surgery at UVA. A few months later, she had two surgeries at Boston Children’s Hospital to grow and connect her esophagus. Earlier this month, the Schoolers traveled to Boston to have Hannah’s esophagus stretched.
Lauren spent the first two months of Hannah’s life living in the NICU, refusing to leave her side. Aaron, then 2 years old, missed his mom, as did the other boys. Lauren missed them as well, but every moment mattered during those crucial first weeks. Hannah’s body was covered with tubes and wires, each attached to a pump or monitor whose job it was to keep Hannah alive.
Jeff, who works as a data operations specialist at Capital One and also has a part-time job at Home Depot, took on more of Lauren’s role, who had always stayed home with the boys. She also home-schooled them.
“This was the first time in my life that I had to deliberately place all of my trust and my faith and my hope in the good Lord’s plan,” Jeff said, “I had to think back to my marriage vows and the promises I made to my wife and to God to trust.”
Support from parishes, others
“Without our church, there is no way that we would have been able to do this and still be somewhat sane,” said Lauren of their parish, St. Elizabeth, Richmond.
Fr. Jim Arsenault, pastor at St. Elizabeth, first met them at Midnight Mass a few years ago, when Aaron portrayed Baby Jesus. He soon invited Brennan and Colin to be altar servers.
The priest was excited to learn Lauren was pregnant; it meant he had another baby to baptize. He learned of Hannah’s conditions before she was born and reached out to their parish family. He dedicated a homily to their story, and the parish quickly responded.
“As a parish, we’re small, but we did what we needed to do to give them our love and support,” Fr. Arsenault said.
His homily was about how people are called to put their faith into action. He received a standing ovation, and the Schoolers received more help than they thought possible.
“Fr. Jim doesn’t just talk the talk,” Lauren said, “He walks the walk.”
He reached out to other parishes, including St. Bridget, Richmond, and St. Michael the Archangel, Glen Allen. Soon, a network of support took shape. Parishioners took turns cooking the family dinner every night while Hannah and Lauren were in the NICU; they drove the boys to their various after school activities; they donated gift cards.
The youth minister took the boys out for some much needed fun — pizza, movies and ice cream. Fr. Arsenault showed up at the Schoolers’ door with an envelope of cash and Lauren burst into tears.
“It doesn’t take much to work together,” said the priest. “I knew our people wanted to do something, so once the word got out, we kind of just got out of the way and let the Holy Spirit take over.”
‘Surrounded by angels’
With donations, raffles, and a $3,000 grant from the Virginia Knights of Columbus Charities, enough money was raised to pay the Schoolers’ mortgage in Richmond for two months, as well as rent for an apartment in Boston which allowed the family to remain together while Hannah was recovering from surgery.
The family spent the 2017 holidays in Boston, where they all contracted a stomach virus and were quarantined. It seemed far from a Merry Christmas but members of St. Elizabeth sent gifts for the boys to open on Christmas morning, trying to create some normalcy during such a chaotic time.
Father Arsenault contacted the aptly-named Basilica and Shrine of Our Lady of Perpetual Help in Boston and connected its pastor with the Schoolers so they didn’t feel alone. The Boston priest befriended the family. Meanwhile, Capital One let Jeff telecommute so he could stay in Boston with the family.
Father Arsenault related a story Jeff had shared with him about walking down a hospital corridor on what had been a difficult day.
“And all the sudden he hears this voice yelling at him, ‘Jeff! Jeff!’ and it was the priest from the basilica,” he said. “Here he is in this big town with this little baby wondering what’s going to happen, am I going to be able to pay these bills, am I going to have a Christmas for my kids, and he turns around and sees the priest.”
Father Arsenault said the connection between the parishes in Richmond and Boston “made a huge difference because they felt like their church was with them.”
Lauren added, “We were surrounded by angels no matter where we were.”
Brotherly learning and loving
Jeff wanted Colin, 14, and Brennan, 10, to learn as much as they could about their sister by reading books and websites about her conditions.
“It’s been a great lesson for my older boys to see that you can be faced with something that seems unbearable, but if you can just trust there is a purpose, don’t fight it, go with it,” he said. “In the meantime, you can laugh a little bit.”
In some ways, Colin, Brennan, and Aaron, 3, had to grow up fast because of Hannah, but their love for her is strong.
“Hannah’s relationship with her brothers is outstanding,” Jeff said, “Each one loves and adores her in their own way.”
The boys are her brothers and her advocates. They visited her every day while she was in the NICU at VCU.
“I love her!” said Aaron.
“She is just like you and me with some special features,” said Colin.
“The past year has been hard, but we have gotten through it with teamwork,” Brennan said, “I love it when she laughs. She makes me feel happy.”
‘In the palm of God’s hand’
Lauren said they found the strength to fight day after day “by the grace of God and with the help and unfailing support of St Elizabeth’s. She’s their baby, too.”
All of Hannah’s surgeries have been successful. She has recovered faster than anyone expected and is rising to every challenge. Her prognosis is positive. She meets regularly with various specialists and takes physical therapy to help her learn things that many take for granted, like how to sit up or swallow.
One big challenge is for her to learn how to eat on her own, something she has never done. While there will be many more challenges in the days and years to come, together the Schoolers are ready to overcome any obstacle.
With the surgeries finished, Lauren said that having overcome so many medical challenges, they just want to watch Hannah blossom and let her be a little girl.
“She is in the palm of God’s hand,” she said.