Lauren’s legacy
Child’s death inspires mother to help braininjured babies
ANN Flood woke up shortly after 8am to the beep of the feeding tube machine in her daughter’s room. Sun rays bounced off the glistening ice outside and through her window as Ann rose, invigorated. She could not remember the last time she had slept so much and so well. Definitely not since Lauren’s birth four years earlier.
The silence that had enabled the mother to have a restful sleep also hid a tragic truth, which Ann discovered as she walked into her daughter’s room. Lauren had died in her sleep.
Ann screamed and cried that morning until she wore out her voice and exhausted her tears. Then she drifted to the window, looked out and was mesmerised by the snowflakes floating peacefully in midair.
“In that chaos and devastation,” Ann said she felt a “warmth from the top of my head all the way down.”
In that moment of clarity, she accepted the shortness of Lauren’s life and decided to make it matter. Surely, lessons learned from Lauren could help other children, she thought.
Within seven months she and her husband, Dan, had founded the Lauren’s Hope Foundation. Five years later, it’s changing the lives of babies who, like Lauren, were born with a brain injury.
Waiting for a smile
Lauren was born April 23, 2003, three weeks early. She was the Floods’ second child, arriving two years after their son, Jacob. Ann’s pregnancy was uneventful until hours before Lauren’s birth.
Waking one night to use the bathroom, she fainted as she sat down. Dan Flood noticed his wife had left the bed but then he drifted back to sleep.
“I woke up to the sound of her hitting the floor,” he said. “There was a puddle of blood on the floor like something you’d see in a horror movie.”
Four hours later, Dan was at Children’s Hospital of Philadelphia, where Lauren was transferred shortly after her birth at Easton (Pa.) Hospital. Ann remained at Easton, recovering from a placental abruption – the premature separation of the placenta from the uterus.
As Dan shuttled between hospitals and cities, Ann pined for the baby who was whisked away before she had a chance to see her or hold her.
“I felt blame,” she said about Lauren’s birth. “Though in my mind I knew I wasn’t responsible, it was my body that did it,” she said. “As a mum, you’re always looking for blame.”
Though Lauren looked like a healthy baby, the repercussions of her abrupt birth became noticeable almost immediately. Seizures plagued her brain and it didn’t take long for doctors to diagnose her with spastic quadriplegic cerebral palsy, which causes stiffness in the limbs and affects general body movement. Unlike the most common forms of cerebral palsy, which generally do not affect cognitive ability, this severe form is often linked to developmental problems and mental retardation.
Lauren didn’t talk, didn’t walk and screamed in pain continually due to chronic acid reflux. Her parents waited six months for her first smile.
“It was the type of smile that could reach into your soul and she had you,” Ann said. “You were just hooked and you couldn’t ever get enough of her.”
Ann searched for innovative ways to stimulate Lauren’s development. She tried pool and equestrian therapies to help her with movement and balance. She got Lauren a communication device to help her express her thoughts.
It took almost four years for Lauren to giggle. She could hardly tolerate food and would spit up during the family’s weekly outings to Detzi’s Tavern in Wind Gap, where they faithfully went to maintain a social life. Just when Ann feared that she was stretched too thin, she discovered she was pregnant. Ann hesitated before sharing the news with Dan.
About to cry, she approached Dan as he was buried under the bedsheets, still sleeping.
“This is great,” Dan told her, reassuringly. When they told their relatives, however, “they thought we were nuts,” he said. They worried that what sent Ann into early labour with Lauren would happen again.
Ella was born healthy. She took to Lauren almost immediately, calling her “Lala,” and liked to crawl onto her lap and caress her face.
“She never saw her any different,” Ann said, adding that Ella became her main helper. “Ella would grab a diaper for her sister and one for herself.”
Dan was in charge of putting Lauren to bed, where the routine included giving her a series of medicines, setting up the feeding tube machine for its night cycle and holding her until she closed her eyes. He had almost missed the ritual the night before she died because he had attended a party with co-workers at National Penn Investment Services.
“I was having a nice time there,” Dan said, “but I don’t know, I just needed to be home.”
Jacob had already gone to sleep and Ann was in the kitchen baking chocolate chip cookies. Lauren remained in the living room, enthralled by one of her favourite distractions: the Christmas tree.
Dan ran to play with Lauren, whose eyes were fixed on the sparkling lights. He pulled her legs, sliding her away from the ornaments and the Nativity scene. Lauren burst into a belly laugh. She had just learned to laugh, and Ann and Dan had fallen in love with the sound.
Dan saw her to sleep and joined Ann in the master bedroom, the feeding tube machine barely audible as it went through its cycle in the night’s calm.
Lauren died that night. The coroner’s report listed the cause of death as unknown. But Ann and Dan Flood believe she had died as a result of a seizure.
When Ann summoned the courage to tell Jacob, his response was more mature than his six years. “Mummy, everybody lives and everybody dies,” he said.
“It was so true,” said Ann, “but it still didn’t make it any easier.”
A motivated mum
Several months after Lauren was born, Ann saw a TV news segment about a new hypothermic program at Vanderbilt University Medical Centre in Nashville, Tennessee, which was making strides in helping babies who had suffered brain injuries at birth.
In the years since Lauren’s birth, some hospitals started using a hypothermic head cooling machine that can cool a baby’s brain, decreasing swelling and preventing further neurological damage.
The device, if used within six hours of birth, can prevent secondary cell damage in brain-injured babies, according to Dr Lorraine Dickey, medical director of the neonatal intensive care unit at Lehigh Valley HospitalCedar Crest in Allentown, Pa.
“It’s not a 100% fix,” Ann said. “The hope is that it’s going to minimise the severity of whatever was to be.”
Ann made the machine her mission and was tireless in her efforts to raise money to purchase one for a local hospital.
She began by making and selling bracelets, threading beads on string for hours on end. She organised her first benefit golf outing and then others. The events drew more and more people. In two years, Lauren’s Hope Foundation had raised nearly $100,000 (RM300,000) to make Ann’s dream happen.
“Don’t mess with a mum’s motivation,” she joked.
When she was sure that she would be able to provide two cooling machines, she approached the NICU staff at Lehigh Valley Hospital.
Dickey liked Ann’s vision, but didn’t want to accept the equipment unless the hospital could provide all the resources needed to treat children who suffered brain injury at birth.
“It’s a high-risk game and you need to have everything in place to do that,” Dickey said.
It took the department seven months to train the staff and create the conditions needed for a hypothermic program to thrive at the NICU. The hospital also hired a neurologist, which pretty much completed the preparations.
A member of the foundation was present at every board meeting during the development of the programme, Dickey said.
When the hospital was ready, Dickey called Ann to accept the machines. They worked together to develop the programme, which is housed at Lehigh Valley Hospital, but available to patients in nearby hospitals as well.
Lehigh Valley Health Network officially inaugurated the hypothermic program on Jan 8. A day later, Liam Nagy was born in Easton Hospital during an emergency cesarean section. Jeanine Nagy’s uterus had ruptured during labour.
Like Ann, Jeanine Nagy did not get to hold or see her baby after birth. Just like Dan, Justin Nagy was a tangle of nerves as he went from his wife’s side in Easton to his son’s at Lehigh Valley Hospital, where hypothermic treatment waited.
Both families met at the NICU, where Liam spent three days in the cooling machine. After the treatment, he was eating and responding to his parents, giving the Nagys hope for a promising future.
“He did the things that babies are supposed to do,” Dickey said. “And that’s what’s cool.”
For Ann, Liam’s well-being is a tribute to Lauren. It’s her daughter’s legacy. – Morning Call/McClatchy-Tribune Information Services.