By Chip MacEnulty, Ph.D.
Guest Contributor
Newborn J breathed for seven precious hours, held by loved ones until he fell asleep and … died.
What moves me about J’s story is not that he breathed for seven hours, but that he lived for nine months and seven hours … and was loved the entire time of his short life’s span.
He lives today (still) in the hearts of the many who gave witness to his life … all nine months and seven hours of it.
He lives on in a black gum tree planted in Schenley Park in Pittsburgh, chosen for the simple reason it is near Magee’s Women’s Hospital where J was born … and died.
A Young Couple’s First Child
Si and Brittany are from Pittsburgh. As both were children of pastors, family was very important to them. They were only six months out of college when they got married, yet it would be ten years before they tackled parenthood.
Like first-time parents, they were excited and nervous. They were going to be parents!
At the twelve-week ultrasound, the tech wasn’t able to view one of the baby’s arms, so an additional ultrasound was needed. Three weeks later, they learned J was missing a forearm bone. At this point in a fetus’ gestational development, if the baby is missing a bone, it won’t grow one at all; it would not be a fully functioning arm. Si remembers:
“It was scary for us. … We felt in our hearts, if this is the child God has given us, we’re going to do everything we can to make this [a] beautiful story [for] a kid who had these challenges but knew that he was so loved.”
The Phone Call
Later, however, Brittany received a phone call from the doctor delivering devastating news. Gene results showed an abnormality on the 18th chromosome, and babies with Trisomy-18 don’t do well. Brittany asked:
“When you say they don’t do well, what does that mean?”
The doctor told her the hard truth: Most don’t make it past birth, and 90% of those who do don’t make it a year.
Generally, a gene abnormality or disorder is called Trisomy followed by the number. We’re all familiar with the abnormality on the 21st chromosome: A marker for Down Syndrome. Trisomy-18 has a grim prognosis: GI and neurological disorders, brain connectivity issues, and not being able to walk and eat without a feeding tube.
Si remembers:
“We were together in the car and spent an hour and a half in the parking lot of a dance studio in the north hills of Pittsburgh just talking and crying. Trying to make sense of what were told and praying.”
It was a painful time for the young couple pregnant with their first child.
A heartbreaking decision needed to be made.
No matter their decision … their hearts would break.
“Waiting to be Devastated”
Both Brittany and Si are children of pastors, and Si is a pastor himself. For them, life in the womb is valuable, and abortion was out of the question. They were told by the doctor that 90% of fetuses with this genetic abnormality are aborted. This was not an option for them, so they prepared to, as Brittany so poignantly said, “wait to be devastated.”
It’s important to mention that both Brittany and Si felt completely supported by the medical practitioners around them in their decision not to abort. They both appreciated that the medical community was very supportive of their decision. (Even at the end, a nurse who helped deliver and hold sweet J would cry when he died.) Even when they were days away from the deadline after which abortion becomes illegal in Pennsylvania, the option was again mentioned but wasn’t pushed on them.
Si shares:
“It really gave us a different perspective [and] having empathy for those who would make choices very different from our own. … We know there are some woman who make the choice and they’re in incredible emotional pain and what they’re looking for is an escape from that pain.”
Their community of family and friends rallied around them as they prepared for an eventual and heart-breaking goodbye.
And as her pregnancy neared full term, it became clear they would have some time with him and prepared their hearts for the moment they would meet and … eventually say goodbye to their little boy.
One thing was sure: J would never be alone.
Nothing but Joy and Gratitude
Studies show that fetuses and babies in the womb experience the emotional sensations of their mothers. They sense emotions, hear voices from outside the womb, and despite the fear and grief coursing through Brittany’s entire body, J felt her love through him and around him.
He would not be alone in his final hours.
As his birth approached, the couple decided to express gratitude for his life by naming him after his father, Si. Even though they knew heartbreak lay in their future, naming him would, as Si says:
“express the truth this is our son and how proud of him we were.”
The day arrived. After his birth, he wasn’t breathing. Doctors got his breathing going, but it was clear he would not survive long. Grandparents were called. The family gathered and held the infant J. After a short time with the grandparents, Brittany and Si were left alone with their precious J. Brittany remembers:
“J was interactive, looking around, making sounds. [It was] special to hold him in your arms, a special time.”
He wasn’t loved for seven hours of breathing; he knew love for nine months and seven hours.
He closed his eyes and passed peacefully in his parents’ arms.
The couple keeps his ashes in a little urn on their dresser.
Mourning J’s life was deep, even as short a life it was. Brittany says:
“I didn’t anticipate all the love we’d feel and then pass away and have no child to give that love to. It was so much harder than I expected.”
She describes a deep hole in her life and a lot of fear that the hole would never be filled.
The Family Grows and Remembers
Soon, a daughter, named Schenley – after the park where J’s tree grows – joined the family, followed by son Geordie. Both are healthy, thank God, but even now, despite a happy home full of children, Si says:
“Even with two kids, there are moments where it feels like someone’s missing. And there is. … Our daughter, Schenley, is very curious about [the urn], and talks about her brother J sometimes. … We make the same vanilla cupcakes each year for J’s birthday and sing happy birthday to him together as a family. One evening around his birthday this year, Schenley brought his urn downstairs to have him sit with us at the table for dinner. … Those moments of remembrance are both sweet and sad.”
A Life of Meaning
Jesus of Nazareth said not even a bird falls to the ground without the Father knowing. That’s certainly saying something considering the many birds that do just that on this big globe. I find this strangely comforting.
For J, his life was as complete as could be. I do believe, even at an unconscious level, in the mysterious way divine light and energy constantly shimmer and refract through every deep-space star and beat of our hearts; J knew he was loved.
He changed the hearts of those who knew him, especially his brave parents.
He knew he was not alone.
All nine months and seven hours of his life.
