Sunday, February 23, 2003
St. Paul, Minn. He had 10 tiny fingers, 10 tiny toes and a hint of downy dark hair. He was a perfect newborn -- except for his heart.
Less than three hours after taking his first breath, Gabriel Kuebelbeck Neuzil took his last, loosening his grip on his father's finger and saying goodbye to a life he could not survive with only half a heart.
Gabriel's parents, Amy Kuebelbeck and Mark Neuzil, had prepared for the moment for months, after a routine ultrasound in the sixth month of pregnancy uncovered a problem with their son's heart.
In a new book, Kuebelbeck tells their son's story and their own as they prepared for a baby who was perfectly healthy inside the womb, hiccuping and kicking, but would not make it on his own once born.
They prepared a cradle and arranged a coffin. They planned birth announcements -- and death announcements. And everywhere -- at the grocery store, at baseball games -- they had to decide how much to tell when strangers asked when the baby was due.
The book takes on all aspects of infant death, and it documents the couple's anguished decision, after much research, against medical intervention.
Instead, they chose to make Gabriel's death as natural and comfortable as possible. "No one could give Gabriel a good heart, so we set out to give him a good life, and I think we did," Kuebelbeck said.
The book, "Waiting With Gabriel: A Story of Cherishing a Baby's Brief Life," is published by Loyola Press.
Right to grieve
Sitting at their dining room table, interrupted occasionally by the squeals of their two daughters -- one 7, one 5 -- playing close by, Kuebelbeck and Neuzil said they hope Gabriel's story will be a gentle reminder that medical science sometimes takes precedent over emotional care -- and that people should feel they can grieve.
"I want to add my voice to the people who are saying these babies are worth mourning," said Kuebelbeck, gently holding a mold of Gabriel's footprints. A framed picture of the wailing newborn sits nearby.
"I consider it a blessing to have been Gabriel's mom at all."
Kuebelbeck's book describes the hours she spent on the Internet after that ultrasound, researching hypoplastic left heart syndrome and reading about the brief, but loved, lives of different infants who suffered from fatal illnesses. One Web site, www.aplacetoremember.com, has more than 5,000 postings from around the world in remembrance of babies who died from a variety of afflictions.
"People are realizing they have a right to grieve," said Timothy Nelson, who started the St. Paul-based Web site three years ago. Nelson's daughter was stillborn in 1983; he also wrote a book about her death, called "A Father's Story."
"The feelings weren't any different 50 years ago when you lost a child; you just didn't talk about it," he said.
Modern medicine allows doctors to diagnose conditions in the early stages of pregnancy, a wonderful advance that nevertheless occasionally confronts parents with an awful question: what to do when they know their baby won't live.
Hospitals are slowly creating support groups and perinatal hospice care for babies with fatal conditions. A woman who knows her unborn child won't live can get help in coping with painful situations, such as attending a baby shower or having someone pat her stomach. They're learning to plan ahead for the precious moments after birth, when they may have their only chance to hold their child, make hand prints and take photographs.
"It gives a sense of control, having some time to think what may happen, instead of it being such a surprise," said Pat Clay, pediatric team manager of Kansas City Hospice's Carousel Program. "Anything you can do with family members to teach them about the grieving process, you impact future emotional health."
Kuebelbeck and Neuzil didn't know how long Gabriel would live; some babies with the defect live for days and weeks, and they made arrangements to bring him home.
But Gabriel's heart defect turned out to be so severe that they had only 90 short minutes.
As his pulse slowed, they studied his plump cheeks, his nearly black hair, and how he drew up his knees. With no priest available, they found water so his father could baptize him. And they filled the room with family who gathered around the bed.
And after Gabriel quietly died, they went ahead with moments they needed to capture. They introduced the girls to their baby brother and took pictures with Gabriel in their arms. They prepared a warm bath, where they gently rubbed and then dried their son, dressing him in soft clothes they would treasure later.
Into the night, family and friends came to meet him, taking turns with the dead Gabriel on a rocking chair. Finally, they made a mold of his footprints and snipped a lock of his hair.