Miracle ambassador
Published: March 20, 2005
Lorraine Kelly was looking forward to the birth of her first child, Emily, when at five months pregnant, her doctor recommended a high-level ultrasound because it appeared she was growing too fast.
“They saw a growth on the baby’s neck and then we were referred to Children’s Hospital of Philadelphia,” said Lorraine.
She was devastated.
“I’d never heard of anything like that and it’s very rare,” Lorraine said.
The hospital monitored Lorraine’s condition closely and when she was 36½ weeks along in her pregnancy, doctors performed surgery on baby Emily before removing her from the womb.
Lori Howell, executive director of the Center for Fetal Diagnosis and Treatment at Children’s Hospital, said the hospital has performed about 60 of the surgeries, commonly referred to as an “exit surgery,” since 1995.
“It has all the risks of a regular type of surgery but we have made every attempt to make it as safe as possible for mom and the baby,” Howell said.
Of those 60 surgeries performed, there were a handful of babies that didn’t survive.
Now an energetic 6-year-old, Emily is a first grader at Sacred Heart Elementary School. She said she enjoys ice skating and math.
Emily has been chosen as the ambassador for Pennsylvania for the Children’s Miracle Network and will travel to Disney World this week along with ambassadors of other states who will appear on the Children’s Miracle Network Telethon.
The Children’s Miracle Network funds programs for Children’s Hospital of Philadelphia.
Howell said throughout the hospital’s 150-year history, it has been the birthplace of many dramatic firsts in pediatric medicine and has fostered medical discoveries and innovations that have improved pediatric healthcare and saved children’s lives.
Lorraine and Emily were recipients of some of those innovations that enabled doctors to save Emily who likely would have died during childbirth.
During the delicate surgery to remove the growth Lorraine was given a general anesthesia and was worked on by a team of doctors that included three fetal surgeons and two high risk obstetricians.
“They needed to open the uterus bloodlessly and work on the baby for about an hour,” said Howell.
The anesthesia sedated both Lorraine and Emily.
“We do that so the uterus is completely relaxed and the blood flow stays between mother and baby,” Howell said.
Emily’s head and neck were exposed so an airway could be established through the mouth.
The growth on Emily’s neck had crushed her airway and paralyzed one of her vocal chords.
“Emily was close to losing the airway completely,” Howell said.
Howell marveled at the sight of such a surgery.
“It’s just unreal at times that you see a baby there alive but the baby is breathing through the umbilical chord,” Howell said.
After the airway was established, the umbilical chord was cut and Emily was taken to another operating room where a team of doctors removed the growth from her neck.
The mass on her neck called a Cervical Teratoma, weighed about a pound.
“Typically it arises out of the thyroid gland and it grows,” Howell said.
Because the mass was sitting on her neck and compressing her windpipe, Emily wasn’t swallowing the amniotic fluid and it began to build up around her in the womb.
The surgery took about three hours to complete and Emily remained in the hospital for four months. She had a tube down her throat for the first four weeks before a tracheotomy was performed to maintain an airway.
Emily had a tracheal tube until she was 4-years-old.
In 2002, Emily’s tracheal tube was removed.
Doctors are reluctant to close the opening in Emily’s neck because they think it may affect Emily’s ability to talk since one of her vocal chords is paralyzed.
Otherwise, Emily lives her life like most 6-year-olds.
She has only a few limitations such as not being able to go swimming because of the opening in her neck. Her mother also has to watch closely when she gets sick.
“A common cold for a regular child is a serious issue for Emily,” Lorraine said, adding that Emily is more susceptible to pneumonia and bronchitis.
Lorraine and Emily are looking forward to Disney World, and being their first trip to Disney, Lorraine expects it will be a very special one.
“It’s really exciting,” Lorraine said. “We just can’t believe it.”
Emily and her mom will start the trip spending a few days in Washington, D.C., where there will be media events with the Children’s Miracle Network and ambassadors from other states. Afterward, the group will travel to Orlando where they will stay in Disney for four days and participate in additional media events including a telethon for the Children’s Miracle Network.
Funds raised through Children’s Miracle Network are earmarked at The Children’s Hospital of Philadelphia for patient care programs. These programs provide constant support for the kinds of services that make a difference in the lives of children and families. The services are offered to every child who visits Children’s Hospital and are among the many programs the Children’s Miracle Network funds.
The Children’s Miracle Network in Philadelphia is part of The Children’s Hospital Foundation, the charitable tax-exempt organization benefiting The Children’s Hospital of Philadelphia.
Founded in 1855 with 12 beds and a dispensary on Blight Street (now Watts Street) in Philadelphia, Children’s Hospital was the first hospital in the United States dedicated exclusively to the care of children.
Today the hospital has 430 beds as well as an extensive pediatric healthcare network with nearly 50 locations.
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