Twenty-eight hours and 10 minutes. That’s how long Elizabeth Leon spent with her newborn son before he stopped breathing.
Little John Paul Raphael was born Jan. 4, 2018, with trisomy 18, a rare genetic disorder resulting from an extra copy of chromosome 18. He was 4 pounds and 1 ounce.
Elizabeth and her husband, Ralph, hoped to bring him home, but realistically they knew they probably had only a few days or hours. So they soaked in their little boy: the way his color changed from gray to pink as he received oxygen from a portable tank, and how his little hands grasped their fingers. They relished wrapping him in his blue blanket, which they’d lovingly picked out months before, staring into his eyes as they opened for the first time, and spending their first — and last — night together.
Though the second day brought indescribable loss, the experience ultimately elicited a profound deepening of Elizabeth’s faith — and a message she now seeks to share with other families.
A SEED OF HOPE
Elizabeth, a longtime parishioner of St. Theresa Church in Ashburn, was surprised when she first had the inkling — and soon the confirmation — she was pregnant. She was in her mid-40s in a second marriage that already included nine children — five from her first marriage, four from her husband’s. This would be the first child from their union.
“While (pregnancy) was unexpected, it was a delightful surprise,” said Elizabeth, who saw the child as tangible fruit from her second marriage.
She proceeded with cautious excitement, holding her breath that she wouldn’t miscarry. Because her age made her pregnancy higher risk, she and Ralph decided to get genetic testing done. Early in the second trimester, she went in for preliminary testing and received the news that their child had a high likelihood of trisomy 18 or 13 — as high odds as the test could predict. They waited for results from the more accurate noninvasive prenatal testing (NIPT) and soon received word: their child had an 87.5 percent positive predictive value for trisomy 18.
The news was “really a guarantee that his death would be at a young age,” possibly before birth, Elizabeth said. The couple grappled with the devastating report, but it wasn’t their first encounter with tragedy.
HEARTBREAK AND TRAGEDY
Elizabeth’s first marriage ended in divorce. The marriage was later annulled, but the experience left her deeply hurt, with five distressed children. Ralph’s first wife died from cancer, leaving a bereaved husband and four children.
They met at St. Theresa Church, and their children attended the parochial school together.
“I think God was so kind in preparing us in other ways before this,” said Elizabeth. “We both had been in situations before … where we were just forced to surrender to something that was beyond our control.
“I just clung to the Lord,” she said.
Following the prognosis, the medical team offered termination, but for Elizabeth that was out of the question. As she headed into the latter stages of the pregnancy, she had to do the unthinkable — arrange for the probable death and funeral of her unborn child, a boy they decided to name John Paul Raphael.
The couple had to “prepare to welcome a baby … while at the same time grieve the baby we were not going to have,” Elizabeth said.
At the start of the new year, an ultrasound revealed John Paul Raphael was no longer growing. For this reason and other complications, including that Elizabeth had polyhydramnios, an increased level of amniotic fluid swelling her belly, the medical team advised an induction. Elizabeth and Ralph scheduled one for Jan. 9.
“The only reason to wait was that I was afraid,” said Elizabeth. “I wasn’t ready to face his death yet.”
As it would happen, “God took the choice out of our hands,” she said.
Elizabeth’s water broke Jan. 4 at 9 a.m. She was rushed to the hospital for an emergency cesarean section. By 10:30 a.m. the baby was born — gray, silent and unmoving. They feared the worst.
Acting quickly, Ralph poured holy water from Lourdes, France, and baptized him — and little John Paul Raphael breathed.
“It was so beautiful that the grace of baptism just brought him to us so powerfully in the operating room,” said Elizabeth. “God’s grace was so present, it hung in the room.”
With the buildup of amniotic fluid released, Elizabeth said, “I could finally take full breaths of air. That’s exactly what it felt like emotionally and spiritually. We had not breathed for 35 weeks and five days. We could finally all breathe together.”
Rejoicing, the family set about celebrating the time they had with the newest member. John Paul Raphel’s brothers and sisters and grandparents gathered in the hospital room, enjoying a music playlist they picked out ahead of time and a special cologne they sprayed on his clothing and toys to associate with him. They cut a lock of his hair and recorded his heartbeat.
In the afternoon the next day, despite the oxygen tube, he started agonal breathing, or gasping, a natural reflex when the brain is not getting enough oxygen. The family who was there sang to him, a final lullaby, and within the hour he breathed his last.
GRIEF AND GRACE
In the months following, as Elizabeth grieved, she felt an urge to write, to start a blog as an outlet. She “found so much strength in reading other people’s stories,” she said. “I clung to other peoples’ stories.”
However, many of the stories she encountered had a starkly different ending.
“Most of what I was reading was not richly Catholic,” she said. “People who got the diagnosis, loved their babies and terminated anyway.”
She said she “couldn’t find a lot of narrative about loving and welcoming a child that was going to die in the Catholic community. We just haven’t filled in the gaps.”
It wasn’t until early 2020 — two years after his death — that she began to seriously consider and start work on a book, based on her blog posts from the past two years.
“I eventually just listened to the promptings of the Holy Spirit,” she said. “I want to offer a book to show women mostly just why it’s worth it.”
Her book, “Let Yourself Be Loved: Big Lessons From a Little Life,” chronicles her experience from finding out she was pregnant, to the news of the likelihood of trisomy 18, an emergency birth, a celebration of life, and the pain of death and grieving. The book was published this month and offers a raw and intimate look into a family seeking to live out their Catholic faith amid tragedy.
“ ‘Let yourself’ be loved was a message the Holy Spirit brought me,” she said. “(John Paul Raphael) allowed himself to be loved. He didn’t have to do anything. What I have found in the four years since John Paul died was that message was for my own heart. It was an invitation to let myself be healed.”
She desires to “accompany women through the process” and hopefully journey with them to a place of healing through her message, her story and possibly workshops, something she’s still working out.
“That grief cracked me open in a way that exposed areas of my heart that needed God’s love and attention,” she said. “The grief can be a pathway to living life in a more beautiful way.”
Bartlett can be reached at [email protected].
Find out more
Go to elizabethleon.org.
