Vickroy: McAuley grad working to save newborns
By Donna Vickroy email@example.com September 14, 2012 2:46PM
Bridget O'Brien-Martin hugs her son, Danny Martin, at their home in Chicago. She has lost two infants, Grace, on the left, and Christopher on the right, to a medical condition called neonatal hemochromatosis. | Matt Marton~Sun-Times Media
NH Angel Ball
Bridget O’Brien’s fundraiser to help fight neonatal
hemochromatosis will be held at 6:30 p.m. Sept. 21 at Gaelic Park, 6119 W. 147th St., Oak Forest. Tickets are $100 and all proceeds will be donated to Lurie Children’s Hospital of Chicago. For information, visit nhangelfund.org, email firstname.lastname@example.org or call (773) 909-3568.
Updated: October 17, 2012 6:21AM
Bridget O’Brien is tough. The Cook County assistant state’s attorney didn’t earn the nickname “The Terminator” by being a pushover.
“I don’t lose, I don’t cry, I get to work,” the Mother McAuley High School graduate said.
Indeed, sitting at the kitchen table of her Southwest Side bungalow, O’Brien remained steadfast as she recalled the complex yet profoundly sad details regarding the deaths of two of her children. She wavered only once.
As she described how she’d never gotten to see her infant daughter Grace without tubes up her nose, O’Brien’s voice cracked and she partially buried her face in the horror of it all. For a moment she was a grieving mom. But then, just as quickly, she composed herself and went on with her mission, which is to get the word out about neonatal hemochromatosis (NH), a little-known condition that claimed the lives of both Grace and her son Christopher a year later.
O’Brien and her husband, Shane Martin, a Local 130 plumber, are parents to 4-year-old Danny. Both have always wanted a big family.
‘They’re with God’
“I lost my mother when I was 19 and my father when I was 29,” O’Brien said. “I don’t want Danny to be an only child.”
In Danny’s eyes, he isn’t; his brother and sister are simply someplace else.
“This is Grace. And this is Christopher,” he said, pointing to photos. “They’re with God.”
Neonatal hemochromatosis is not uncommon but is often misdiagnosed, in part because there is no test to detect it during pregnancy, which is when it needs to be treated. It occurs when the mother’s system forms an antibody to her baby’s liver while the baby is in utero. Most times, such pregnancies end in late-term miscarriage or stillbirth. The babies who are born alive quickly succumb, usually because their condition is misdiagnosed or because their care is not handled properly.
For example, feeding breast milk to a baby born with NH is among the worst things to do. Without a proper diagnosis, medical staffers don’t know not to allow that.
Right now, an autopsy is the best way to detect NH, O’Brien said. But mourning parents often opt not to have one performed.
“It’s just too much for them, the thought of Y-sectioning a newborn,” she said.
Public invited to help
Finding a way to detect NH during pregnancy is one aspect of the research that O’Brien would like to help fund. She is hosting a fundraiser Sept. 21 at Gaelic Park in Oak Forest. Proceeds will go directly to Lurie Children’s Hospital in Chicago, which is where the leading authority on NH practices.
Dr. Peter Whitington, director of organ transplantation for the Siragusa Transplantation Center at Lurie, gets referrals from around the world. O’Brien was referred to him after Grace was born at Christ Medical Center in Oak Lawn in June 2010. Doctors there diagnosed her condition within 72 hours. Still, Grace lived only 80 days.
Whitington said treatment works but doctors have to suspect or diagnose NH before it will be administered. As it stands now, he said, a patient must lose a child before anyone suspects it might happen again. He’s treated many patients who have lost more than one child to the condition.
“One woman lost six, and many women have lost three or more,” he said.
Another try at a child
Contrary to popular belief, he said, NH is not rare.
“As we have learned more about it and been able to show others how to recognize and diagnose it, we have found that it is the predominant cause of liver failure in the newborn and an important cause of stillbirth and infant death,” he said.
Once a woman has a baby with NH, the odds of subsequent pregnancies involving NH increase 80 percent, he said.
Still, O’Brien went into her third pregnancy optimistic. She knew her child likely would be born with NH, but this time she also knew she could opt for treatment during pregnancy, which has a 98 percent success rate, as well as treatment after birth, which is also highly successful.
She began treatment in the 12th week of pregnancy. When Christopher was born on Oct. 14, 2011, he was treated, as well.
For a while, it seemed the approach had worked. Christopher was holding his own. But then, in January, the 3-month-old developed a respiratory condition known as RSV (respiratory syncytial virus) and because his liver already had been compromised, he suffered seizures. He was rushed to Hope Children’s Hospital and then transported to Lurie, where he died Feb. 8.
Until Christopher, no child who had been treated for NH both during pregnancy and after birth had died, O’Brien said.
Source of comfort
Unknowingly, O’Brien and Martin were welcoming Christopher into the world the day after one of O’Brien’s former schoolmates at McAuley was grieving the loss of her son to NH.
Ellen (Gergitz) Metz and her husband, Kevin, who owns Three Corners Restaurant in Lemont, had a healthy 3-year-old daughter when Gavin was born on Oct. 11, 2011. Doctors knew something was wrong and began a battery of tests. Two days later, Gavin died.
One day in March, Metz was trolling the Internet looking for information on NH, when she read a comment on a blog out of New Zealand. She emailed the commenter and quickly learned she was her old friend Bridget.
Metz, who grew up in Orland Park and lives in Chicago’s Bucktown neighborhood, and O’Brien quickly reconnected and joined forces to inform the public about NH.
“She has been such a support and comfort to me,” Metz said. “Bridget is strong and very intelligent. She is going to totally change the face of this disease. Her and Whitington are going to help other moms.”
Metz said she plans to try again to have another child. This time, she’ll get the preventative treatment while she is pregnant.
O’Brien is just as determined to have another child, although she hasn’t decided how just yet.
Meanwhile, O’Brien is focused on her mission.
“There is no better advocate for a child,” she said, “than a baby’s mother.”