Giving birth to a healthy baby often requires a supportive community that encourages expectant mothers and their families to bring new life into the world.
Sophia Murphy was born in 2022, and her mother said her birth felt a little different.
Kim Murphy told The Baltimore Sun that early in her pregnancy, an ultrasound revealed she had a severe heart defect. Subsequent blood tests revealed that Sophia may have a rare genetic abnormality known as trisomy 18, which gave Sophia only a 5% chance of survival at birth.
Later, a genetic counselor called and asked a question that King said was more of a suggestion: “Do you want to terminate the pregnancy?”
“We’ve always been pro-life,” said her husband, Sean Murphy. “So, staying pregnant wasn’t a difficult decision.”
Completing it brings its own set of challenges.
As the Murphys dealt with Kim’s pregnancy and Sophia’s health issues, the Ellicott City couple said they often encountered obstacles posed by the hospitals, medical professionals and insurance companies they relied on.
“Will we carry her to term? Will she be breathing when she comes out? And then Hopkins told us, ‘As long as she doesn’t have Trisomy 18, we can treat her.’ “I think that’s the heartbreaking part,” King said. “You wake up crying in the middle of the night.
“There was definitely a lot of prayer in the beginning. Just, you know, let her live and God, please let this happen,” she said. “Sean would put headphones on my belly and we would listen to Mozart.”
Now 3 1/2 years old, Sophia is strong enough to be off the ventilator for up to an hour while her parents introduce her to visitors.
Then it was time to take a shower, change her breathing tube and clean clothes, before she resumed watching the TV show “Cocomelon” on her tablet. Most of these tasks require the help of her home nurse, Abby Peters. Kim twisted Sophia’s hair into two buns and was interrupted to clean the mucus from her breathing tube. Soon, however, Sophia was happily bouncing along to “The Itsy Bitsy Spider,” and her heart rate and blood oxygen returned to normal—for her.
Sofia cannot speak but listens and responds to her family with a smile and makes faces when she feels uncomfortable. She can grab things with her hands, and Kim said she sometimes pulls out her breathing tube and shows it to her parents. She needs support to sit up but can roll over and do sit-ups.
Children with trisomy 18, also called Edwards syndrome, Few people survive birth, and some live to see their first birthday, according to the National Institutes of Health’s Genetic and Rare Disease Information Center. Trisomy 18, named for the extra copy of chromosome 18, which until recently was considered incompatible with life, affects less than one in 4,000 children. Babies who survive birth may lose weight and develop deformities in their heads, jaws, hands, and feet. They may suffer from heart and organ defects as well as severe cognitive problems. Less than 10% of people live to see their first birthday, but for those who do, the chance of surviving to age 5 increases to 80%.
Sophia spent her first nine months in neonatal intensive care units in Baltimore and Wilmington, Delaware. She underwent multiple heart surgeries and had a tracheostomy, or breathing tube, installed in her throat. Her pediatrician, Dr. Oliver Galita of Johns Hopkins University School of Medicine, said she now requires regular nebulizer treatments, a breathing tube, a feeding tube and three medications.
“Sofia has been fighting to survive since she was born. Over the past three years we have been trying to keep her stable and doing well, but she needs ongoing care,” Galita said. “This will be her presence. We hope it doesn’t get worse.”
Raising and caring for Sophia was a trial for Kim and Sean, they said, but they never doubted their faith or belief in keeping Sophia alive.
“We’re so lucky to have her as happy as she is and to have her thrive as well as she does, which is kind of like a miracle,” Sean said. “I’m glad I have more time to admire her smile.
“This is not your life or mine, but she loves it 95 percent of the day and she expresses it with her smile,” he said
Pressure and Challenges
Sophia was born on May 20, 2022, and King said her health care providers frequently pressured them to terminate life-sustaining care and sometimes refused to perform medical procedures.
King said Sophia needed surgery to relieve her heart and lungs from struggling outside the womb, but the Johns Hopkins University School of Medicine would not approve the surgery because of her condition.
“Doctors are concerned about increased mortality in children who are put on ventilators for heart surgery,” Sean said. But he added that if they didn’t take any action, she would almost certainly die.
Hopkins declined to comment.
He said doctors planned to remove Sophia’s breathing tube 10 days after she was born and let her die because there was nothing more they could do.
But “we decided not to [remove the tube]. We were going to find a hospital that would be able to support her,” Sean said. “They seemed almost disappointed with our decision, but once we made the decision, the nursing staff were very supportive. “
It took two months to find another hospital willing to operate on a baby with trisomy 18, but eventually Nemours Children’s Hospital in Delaware accepted Sophia’s case.
After several successful heart surgeries, bringing Sophia home presented a whole new set of challenges.
As a nurse, Kim is trained to operate ventilators, oxygen, heart monitors and nebulizers, and is prepared to manage the countless other prescriptions, equipment and supplies her daughter needs every day.
Sean, who works for the National Security Agency, said he had a lot to learn in the beginning.
“I had to go through a certain level of training,” he said. “The first time I tried to make a [breathing tube] Change, I almost killed her. Her oxygen started to drop and her skin started to turn blue, and the care team rushed in.
Their health insurance covers a home nurse to assist with medical equipment or when Sophia removes her breathing tube. They must obtain authorization to serve every three months, which sometimes triggers another battle.
Ultimately, Kim and Sean believe their faith guided them through the challenges of raising Sophia.
“I think God puts people in certain places for a reason,” King said. “I always joke, ‘Am I going to be a nurse again? Probably not.’ But I think this was God’s way of preparing me for having a daughter with these complex medical issues. So I don’t think any of us would change anything.”
Have a news tip? Contact Karl Hille at 443-900-7891 or khille@baltsun.com.