The Testimony of Baby Leo’s Life
Morgan family’s youngest with Trisomy 18 wins over nurses and touches many hearts.
Editor’s Note: Due to the sensitive subject matter, please read with care.
Leo Morgan’s tiny heart stopped during his birth, but death hasn’t diminished the impact of his short life or his parents’ fight to give their son, diagnosed with Trisomy 18, the opportunity to be born and experience his family’s love.
The Woodbury, Minnesota, family and many others have been inspired by Leo’s fight for survival, despite serious health problems caused by the chromosomal syndrome.
Also inspiring were the sacrifices and determination of his parents, Jeffrey and Elizabeth Morgan, to give him the best chance at life — something many children like him don’t get.
The Morgans said they feel blessed that they were able to perform an emergency baptism for Leo, and they are also glad they challenged the medical establishment’s near-universal conclusion that the lives of babies with health obstacles like his have little value and that they should be aborted.
By the time of Leo’s Oct. 16 death, which followed the nearly 13 weeks Elizabeth, 34, spent in a St. Paul hospital during the pregnancy, the baby had won the hearts of the nurses caring for him, Elizabeth said. “It was just such a testament [that] his life matters.”
Leo’s two brothers and two sisters, who were at the time aged 2 to 9, were also there every step of the way, Elizabeth said. “We were very honest with our kids, and they would come in and the nursing staff got to know them,” Elizabeth said. “So they would ask about their brother, and they wanted to hear his heartbeat and see his pictures.”
Elizabeth was admitted to the hospital after she started hemorrhaging at 19 weeks. Four days later, her water broke. She continued to lose amniotic fluid daily while in the hospital, but little Leo’s heart rate remained strong, and he kept moving in utero, she said.
While Elizabeth was in the hospital, Jeffrey, 33, worked remotely from home so he could care for their children with the help of the children’s grandparents and others.
Prenatal tests were administered soon after Elizabeth was admitted to the hospital to detect genetic disorders and other health issues. The results confirmed doctors’ concerns that Leo had a fetal anomaly. He was found to have full Trisomy 18: a syndrome that involves having an extra No. 18 chromosome in all of his cells, which often results in birth defects. Ultrasounds showed that Leo’s brain hemispheres were not connected; he also had a hole in his heart and possible issues with his stomach and kidneys.
Giving a vague prognosis for Leo’s survival and “quality of life,” several doctors handling his care talked about abortion.
The Morgans insisted that abortion wasn’t an option, and continued to pray to receive clarity about his further care. “We kept telling [doctors] we know and understand his odds,” his mother said.
By allowing Leo to live as long as God intended, the couple wanted to give him a chance to “show what he was capable of,” she said. “Our goal was to meet and baptize him.”
Leo continued to grow, though he was smaller than the couple’s other children, Elizabeth said. He faced an uphill battle, but his care team admitted they wouldn’t fully know his condition until after his birth, Elizabeth said. “That’s a different narrative than the fatal diagnosis — he has no chance — and that differentiation changes people’s minds.”
Doctors wanted Elizabeth to deliver Leo at 36 weeks. Elizabeth decided to deliver naturally, as she had her other children, rather than having a C-section, so the couple could be fully present during his birth, she said, adding, “If he survived a minute, I would be available to hold him, to know him.”
Many of the nursing staff said they thought Leo would survive his birth, but at first, they didn’t want to continue monitoring his heart during the birth, Elizabeth said.
“We said, ‘Since we have gotten to hear every single one of his heartbeats, we want to hear his last one,’” she said.
Eventually, the staff agreed to continue using the monitor. Leo’s heart rate was strong and stable, Elizabeth said, but it dropped rapidly before stopping altogether, Elizabeth said.
“He went very quickly, but we had the privilege of hearing his last heartbeat, of knowing the moment he passed,” she said.
“The room when his heart stopped beating was the most peaceful,” she said. “It should have been traumatic, and it wasn’t. The room was full of so much love and God’s palpable grace.”
“Our conversation with our kids revolved around, ‘This is what love looks like, love is sacrificial, and love is inconvenient and unconditional,’” Elizabeth said. “We’re not called to love in just the easy; we’re called to love also in the heart, and so we kept telling everyone that our kids need to meet their brother to see how valuable he is and that he is perfectly formed.”
The kids “got to dress him and hold him; and the beauty and innocence of watching them — especially our two older girls — hold him like he’s any other baby” was special, she recalled.
The Morgans told their pastor that they wanted Leo’s funeral to be public because their extended family and community at St. Agnes Catholic Church and school in St. Paul had followed his development and supported the family in different ways during his brief life.
“Something I think we didn’t realize was because of the length of my hospital stay, our community rallied around our family in such an incredibly humbling way,” she said. “We had a meal train for 18 weeks. … We said, ‘We can’t keep our community away; they desire to be here.’”
“After the funeral,” she added, “the women and moms who have miscarried or lost a child who came up and were grateful for the opportunity to grieve and to be able to attend a Mass, they’re expressing that this was the closure they needed for the baby they lost.”
While in the hospital, the couple had, on loan, several saints’ relics. Just before Leo’s birth, a friend brought a first-class relic of Pope St. Leo the Great. “We got to bring St. Leo the Great home with us for the first two months,” she said. “He came to Leo’s funeral.”
Now, a picture of the family’s new little saint sits on their home altar, and each night they ask for his intercession.
As the dates of baby growth milestones come up, the family especially misses Leo, but they have the hope of heaven, Elizabeth said.
“One of the first times we went out to the cemetery, our oldest was cartwheeling around the cemetery and our second [daughter] was crying,” she said. “She looks at her older sister and says, ‘How can you be cartwheeling, and how can you be so happy?’ and [the older daughter] looks at her sister and says, ‘He’s in heaven. Why are you upset?’”
The Morgan children’s beautiful, simple faith reminds the couple of the Catholic theological teaching of “both/and,” Jeffrey said, noting that they recognize both the sadness and the beauty of Leo’s brief life.
“We got him to heaven,” Elizabeth said. “Our one obligation was to get him to heaven.”
Leo’s life has a purpose, she added. “If us sharing our story gives another Trisomy 18 baby, or any baby for that matter, the opportunity to meet their mom or their dad, then it’s all worth it.”