Hayley and Jonathan Hirschmann’s twins were born in October 2000 at just 25 weeks gestation. Their newborn son passed away hours after birth, and their one-pound, 10-ounce daughter Lauren spent her first 96 days in the neonatal intensive care unit at Saint Barnabas Medical Center in Livingston, New Jersey.
After Lauren came home healthy, the Hirschmanns were so grateful they made a pledge to raise money for the NICU. Seventeen years later, that has meant donations of more than $5 million through events such as the annual Miracle Walk, which commemorates all of the miracle babies who graduate from the NICU.
“The walk is always a feel-good day,” says Hayley Hirschmann of the event that takes place every October close to Lauren’s birthday. “Staff and families reconnect, and it feels like a family reunion.”
Family just might be the enduring legacy of the Hirschmanns’ efforts. Hayley Hirschmann went from being a NICU volunteer to a part-time staffer in 2005, with the goal of enhancing the unit’s family-focused care.
In that role she helped pioneer groundbreaking initiatives, such as a change in hospital protocol to allow older siblings into the NICU with their parents.
“I had formed a Family Advisory Council... to enable parents to share feedback with staff,” says Hirschmann. At one such meeting, a mother said she and her husband had never been able to see their newborn son together, since one of them needed to stay outside with the older children. "We were just broken to pieces by that," Hirschmann said.
So Hirschmann researched the practices at other hospitals and found supportive studies, sharing her findings with Dr. Kamtorn Vangvanichyakorn, the NICU's clinical director. They also put together a handbook and a mini-tutorial to prepare children for visits with their newborn siblings in the NICU.
“We were so afraid in the beginning that siblings would be an infection risk, a disruption, or be scared to see a baby with tubes on them, but it hasn’t proven to be the case,” says Vangvanichyakorn. “It hasn’t affected infection rates at all but it has improved patient satisfaction and bonding, and it’s been a benefit to everyone; you have happy families and happy staff — it’s been an eye-opener.”
The new policy was officially implemented in 2008 and is “part of the culture now," says Hirschmann.
One of the first mothers to benefit from the change was June Raegner, whose daughter Bridget was born prematurely in December 2007.
“It was enormously stressful having a 25-week micro-preemie on many levels but one of the most difficult things was seeing how hard it was for my three older children, Jack, 9, Catie, 8, and Fiona, 4,” said Raegner.
“The NICU social workers and child-life staff helped prepare my kids by showing them an isolette with a teddy bear in it and explaining the functions of the tubes and wires in a sensible way," she said. "They talked to them about how she was developing differently. They also talked about keeping Baby Bridget healthy when she came home, and showed them good hand-washing. It was a wonderful experience for Bridget’s siblings and it made their tiny sister real to them.”
Krystal Graves was grateful when her son Jaxon, 2, was able to visit his newborn brother Weston in the NICU. “The visits helped Jaxon comprehend the situation a bit better," she said. "They also allowed for family bonding and a sense of normalcy, when things were anything but normal."
Now, families have a new-and-improved space to be with their newborns. Last month, Saint Barnabas opened a state-of-the-art NICU, housed in a new pavilion of the hospital.
“In the new pavilion, we have room for more comfortable recliners and I see families stay in the room longer and bond with the baby longer,” notes Vangvanichyakorn.
This past weekend, the Hirschmanns and their daughters Lauren, almost 17, and Jessica, 16, proudly led the 17th annual Miracle Walk, which drew more than 1,500 people.
"I'm always touched by the kids of all ages and sizes walking around the park in the different colored Miracle Walk shirts that say "I'm A NICU Miracle Baby" on the back,” says Hirschmann. “It moves me every year!"
Follow Rachel Peachman on Twitter @RachelPeachman.