Tot’s illness marks critical need As baby turns 1 at EMMC, hospital seeks funds to expand special unit

BANGOR – At midnight Monday, young Brianna Speed stopped breathing. Pediatric staff at the Eastern Maine Medical Center compressed her tiny chest to bring her back to life. Thirteen hours later, on Tuesday afternoon, the red-haired, blue-eyed tot was celebrating her first birthday at the hospital, surrounded by presents, cake, loving parents and the well wishes of nurses and doctors who have cared for the baby during her precarious first year of life.

Affectionately dubbed the “2 million dollar baby,” the estimated cost of her medical care so far, Brianna was born weighing just over 2 pounds on July 3, 2000, at EMMC. The daughter of Sandra and Rob Speed of Pittsfield, Brianna suffers from a condition known as oomphalocele which, in simple, graphic terms, means her liver and part of her intestines were located outside her body at birth. Other organs were displaced. The ailment is a developmental defect that occurred during pregnancy and involves a herniated area in the umbilical cord.

About one in 100,000 babies are born with the defect, according to Dr. Scott Knight, a neonatologist at EMMC’s Rosen Neonatal Intensive Care Unit. In her first year of life, Brianna has had 13 surgeries, fought infections and careened toward death more than once. She has never spent a night outside the hospital.

Her parents credit the life-saving technology available at the NICU and the care of doctors and nurses affiliated with EMMC, with keeping their daughter stable through some very difficult times. They invited members of the media to Brianna’s first birthday to advocate for the planned expansion and renovation to the neonatal intensive care unit, located on the seventh floor of the hospital.

Brianna spent nine months in the neonatal intensive care nursery, elbow-to-elbow with many other infants with critical health problems. The care she received was “the very best,” said her mother. However “it’s hard for even the greatest caregivers with space as cramped as the NICU,” Sandra Speed added. More space is needed for a kitchen and private area for parents. “There are so many emotions a mom goes through when her baby is in the NICU,” Sandra Speed said. “If a new mother wants to pump her breasts there is no place to do it,” she added.

Knight said the intensive-care unit operates at capacity most of the time, which means caring for 17 to 18 seriously ill infants at once, about 350 babies per year. The number of sick babies in the NICU has doubled in the past two years and shows no sign of dropping off, according to the neonatologist.

So far, $1 million has been raised for a project with an estimated cost of $10 million.

For Brianna, the physical toll of her ailment is evident in the tube running into her throat to help her breathe and another going into her stomach to provide liquid nourishment.

She is unable to eat because her esophagus does not work normally, causing food to rush back up into her throat in a reflux reaction.

On Tuesday, her mother put a dab of frosting on Brianna’s lips. She smacked heartily at the confection then wrinkled her brow. Tired, she puckered her lips as if to cry but no sound came out. The tube in her throat takes away most of her ability to make baby noises, although an occasional vocalization will come out, her parents said.

She has had two eye surgeries after her retinas detached, the result of strong and necessary oxygen doses being forced into her body. She faces surgery next Monday when pediatric surgeon Dr. Thomas MaGill of Bangor will work on her esophagus.

Despite a rough night, Sandra, 37, and Rob, 34, on Tuesday said they are grateful for their daughter and for the NICU facility that enables them to keep her close to home.

Traveling to Portland or Boston would be an undue hardship at this emotional time, they added.

Devout Baptists, they have placed their child’s fate in the hands of God but they depend daily on the skill of those closest to their daughter to keep her alive. Insurance and Medicaid has so far covered the cost of her care.

Despite some setbacks Brianna’s health has slowly improved. Her parents spend every day by her side. Sandra Speed said she has spent 15 nights at her Pittsfield home in the past year.

They plan to take her home one day.

A happy baby, Brianna turned her head and wiggled her arms in excitement Tuesday when her red-headed father spoke to her. While words flow from Sandra Speed, her husband uses a few simple words to describe his feelings.

“She’s my world. She’s my little girl,” he said.