Home / News & Publications / Michigan Catholic News / 2009 / Such a little girl, such a big miracle
Such a little girl, such a big miracle
by Jared Field of The Michigan Catholic
Published October 30, 2009
Marysville - Glenn and Kim Miller, joined in chorus by a choir of family and friends, prayed without ceasing for their miracle in miniature.
"We prayed all the time," said Glenn, who lost his 9-month-old baby daughter, Emma, to a rare chromosomal disorder in May. "We prayed for a healthy baby. And, thinking back, I think we actually got a miracle.
"God wanted Emma to come up to heaven with him, so that's what he did; we prayed enough that he gave us nine and a half months with her."
After just 26 weeks in the womb, Emma was officially diagnosed with Trisomy 18, a genetic disorder caused by the presence of all or part of an extra 18th chromosome.
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Jared Field | The Michigan Catholic
Glenn Miller holds a picture of his daughter Emma, who died in May, just two months short of her first birthday. Emma was born with Trisomy 18, a rare genetic disorder caused by the presence of all or part of an extra 18th chromosome. Armed with the knowledge that she probably wouldn’t live a full year, Glenn and his wife Kim chose to bring Emma to term. Their other daughters are Jessica (6, left), Samantha (9, in back) and Kara (4). |
The couple recalls the bleak prognosis placed upon their little miracle, and the firestorm of emotions that enveloped them.
"They were telling us she probably wouldn't be born alive or, if she was, it would just be a few days, or weeks - certainly a short time," said Glenn, 45.
Kim said that, at the time, she was told that only 10 percent of babies born with the disorder live to see their first birthday and that the majority don't make it to term. Due to the dire prognosis, the Millers were presented with the option of giving up on their miracle and inducing labor to save the family from further grief.
"That was not an option," Kim admitted. "We knew this was the baby God chose for us to have. We just left it in God's hands; in His will ... I wasn't going to change it."
Even still, Kim didn't know what God had planned for the future of her family, now six strong.
"I was just scared to death of what we were about to endure," said Kim, 38, mother of three daughters, Samantha (9), Jessica (6) and Kara (4).
"It was tough," added her husband. "It was better when she was actually born, because she was at least with us. But when we were pregnant, that was the worst time."
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Jared Field | The Michigan Catholic
A small photo of Emma Miller sits on an end table in the Millers’ living room. |
'I felt alone'
Kim said that much of her trepidation was borne of ignorance. Her obstetrician had never seen Trisomy 18 before, she said, nor had her pediatrician.
"I knew of no one around who had ever seen it, or gone through it; I felt alone," she said. "There was nobody here who could tell me anything about the child I was carrying ... nobody had experienced it before."
It was during this time that her doctor referred her to Walk With ME, a pediatric palliative care program at St. John Health System in Metro Detroit available to children of all ages with life-limiting illnesses.
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Jared Field | The Michigan Catholic
This poster has one of Emma’s tiny handprints for every day of her life. “In her 295 days, she made such a huge impact,” Kim Miller said. |
Glenn admits that, during the process, he didn't really like seeing the Walk With ME crew hanging around.
"When they were here there was always something bad going on," he said. "But, I can't imagine going through it without them."
After the couple, with the help of Walk With ME, prepared their young family for the worst, Emma was born on July 18, 2008 - the Friday that changed the Millers' lives forever.
'Every child is a gift'
Kris Baguzis, a registered nurse who worked with the Millers throughout Emma's life, says there are many families who share the Millers' struggle without the help Walk With ME can offer. She says the program is committed to providing personal care to children and the entire family throughout the process.
In Emma's case, as in all others, the goal of Walk With ME is clear.
"We wanted (Emma) to live as long as possible, as well as possible," she said.
Linda Nelson, a social worker at Walk With ME, says she was struck by the Millers' unwavering desire to choose life, come what may.
"They chose to have (Emma), despite knowing that she would have multiple life issues," she said. "They celebrated and cherished her life throughout."
Baguzis was similarly struck by the Millers' example and encourages those in circumstances akin to the Millers' to seek help, and to find gladness in the midst of grief.
"Every child is a gift, and every life has value," she said. "We don't know why these things happen, but I know these kids are all here for a reason."
'Enjoying every moment'
Most things, big and small, remind the Millers of their little miracle.
The calendar says it's been a year since Kim dressed little Emma up in every pint-sized Halloween costume she could find. She remembers their family trip to Frankenmuth and the time they took her on a campus visit to Michigan State. The family even celebrated birthdays every month, milestones worth marking in the life of a miracle.
"We lived enjoying every moment," Kim said. "We enjoyed her every minute."
Kim knows now, more than ever, the truth about God's give and take.
"He gave us a precious gift," she said. "(Emma) was our perfect gift. I wouldn't change anything. I mean, I would love to have her here with me, but I wouldn't exchange her for a healthy baby. I wouldn't change anything ... we're forever thankful to have had her.
"All the suffering and the pain, it was a gift ... it was so worth it."
For more information about Walk With ME, call (800) 248-2298 or online at stjohn.org/Hospice/walkwithme/.
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