Preemie parents help one another through the stress of NICU

BALTIMORE — Shocked, worried, and physically and emotionally exhausted — this was not how Joi Turner expected to feel after the birth of her first child.

Alex arrived at Sinai Hospital in Baltimore close to three months early. At just one pound, 14 ounces, his head fit inside Turner’s palm.

“When you go through pregnancy, nobody ever says, ‘Hey, you might have the baby early,’” the Baltimore resident said. “It’s a shock.”

Turner and her fiancé spent six months by Alex’s side in the neonatal intensive care unit (NICU) at Sinai and then the University of Maryland Medical Center, hoping he would recover from surgery to repair a heart defect and eventually grow to breathe and feed on his own.

But Turner wasn’t alone in her journey. Her friend, Natalie Estelle of Owings Mills, Marylalnd, had also delivered her first child, Andrea, close to three months pre-term.

The women often compared notes on the challenges of preemie parenthood: learning the meaning of each beep and alarm, sleeping at the hospital weeks at a time, fighting the guilt that comes with sleeping at home without the baby, deciding how to split maternity leave between when the baby is in the hospital versus when the baby goes home, squeezing in NICU visits during work lunch breaks.

That’s why, in February, Turner and Estelle launched Preemie Moms Rock, an organization that provides healthy meals and emotional support to NICU parents. It’s one of several local and national programs run by fellow preemie parents and hospitals in an effort to ease their stress.

Parents with infants in the NICU often get little sleep, forget to eat or resort to quick, unhealthy foods so they stay by their child’s side, Turner said. About a third of them suffer from post-traumatic stress disorder (PTSD), a mental illness triggered by traumatic events.

“Everyone is focused on the kids, and they should be,” Turner said. “But (mothers) need so much at that point.”

In Maryland, premature births are not uncommon. In 2013, one in eight babies was born pre-term (before 37 weeks of the full 40 weeks of gestation), according to the March of Dimes. In Baltimore City, that number increases to one in seven.

And the prevalence of health problems, some of which are life-threatening, is high in premature babies. The U.S. Centers for Disease Control and Prevention calls pre-term birth the greatest contributor to infant death and a leading cause of long-term neurological disabilities.

Most pre-term babies have low birth weights and experience respiratory problems that require mechanical ventilation or other devices to help them breathe, said Dr. David Kanter, a neonatologist at Sinai Hospital.

“Their lungs are just not ready to be here,” he said.

They can also have apnea, a pause in breathing, and bradycardia, a slowing of the heart rate, said Janet Alderfer, NICU nurse manager at Sinai Hospital. These conditions are potentially life-threatening if not monitored.

Depending on the gestational age at birth, some premature infants are kept in dark, covered isolettes — incubatorlike homes with temperature and humidity controls — to simulate the womb. The lack of physical contact with the baby can take an emotional toll on parents as well.

At Anne Arundel Medical Center in Annapolis, NICU nurses encourage parents to participate in the preemie’s care whenever possible, said Polly White, nurse navigator for the NICU.

“We want them to be involved as much as they can be and want to be,” she said. “That helps because they see their baby as a baby and not a thing in an isolette.”

Parents of babies born at 32 weeks or earlier receive “journey bead necklaces,” collecting up to 10 beads, each representing a parental milestone, like the first diaper change, first bottle or breast feeding, and the first time the baby is held skin-to-skin.

“It’s a sweet little token and a memory,” said Shanna Blackwell, a Baltimore resident whose son, Moses, was born at just 23 weeks and two days. “And it’s a reminder of the journey he’s been through. This is our little baby, and it’s a miracle that he’s here.”

Amanda Rombach’s daughter, Emily, was born at 26 weeks and spent 86 days in the Greater Baltimore Medical Center NICU.

“I could touch her hand, but I couldn’t hold her,” the former Baltimore resident said. “For the first month or so, I didn’t get to change her diaper, so I didn’t feel like a mom.”

The diaper changes and late-night feedings eventually came. But four years later, when Rombach’s second daughter, Anna, arrived early, she did not survive.

“No matter how young a baby is when they pass, they’re still a baby, and they’re still a part of you,” she said. “I didn’t know I could love and it would hurt so much. I think about her every day.”

Parents are often unprepared for the medical and emotional issues that come with having a preemie, Alderfer said.

“They’re not going to go out in the wheelchair with the lovely bow in the baby’s hair,” she said. “It’s fear of the unknown. All the things associated with shock and trauma happen to these folks.”

Mental support is essential for parents of preemies in the NICU, parents said. Many hospitals have social workers dedicated to the NICU and postpartum units who discuss the stress associated with having a baby in the NICU, provide mental health screenings and refer parents to community resources as needed.

Still, many parents said mental illnesses like PTSD don’t strike until weeks or months after the baby is born. A 2009 Stanford University School of Medicine study published in the journal Psychosomatics found that a third of NICU parents had diagnoses of PTSD four months after their baby’s birth.

“You have a birth plan in mind, and when things don’t go that way, and you’re forced into a situation where you have to use the NICU, it’s a very unnatural environment,” said Michelle Stansbury, a Westminster resident who lost her son, Mason, a month after he was born.

Shortly after Mason died, Stansbury was diagnosed with PTSD.

“A lot of times, it goes under the radar,” she said.

A March of Dimes NICU Family Support Program at Medstar Franklin Square Medical Center increased its focus on mental health awareness for life after the NICU, said Christy Keppel, the program’s former family support specialist.

“We found this dearth of information out there,” she said. “This is affecting a lot more people than we realize.”

The program trained nurses to recognize PTSD and understand its long-term effects. It also added discussions on stress reduction during weekly “parent topic hours” for NICU families and provided parents with a booklet on mental health disorders.

Parents said the NICU nurses and doctors are invaluable resources when it comes to preemie care and support. Many hospitals, including Sinai, also have rooms where parents of NICU babies can stay overnight.

But parents said the biggest support they receive comes from fellow preemie moms and dads.

At Sinai Hospital, Stansbury created “Mason’s Library” in honor of her son. The library is filled with hundreds of books to be used by parents reading to their preemies or by siblings in need of entertainment. Alderfer said parents use the library daily.

Rombach routinely volunteers with the March of Dimes, walking at the organization’s annual March for Babies and sharing her story at Medstar Franklin Square Medical Center’s March of Dimes NICU Family Support Program.

“I felt like if I could talk about it, it would help others,” she said.

But the challenges of having a pre-term baby aren’t just emotional; it can affect parents physically, too, Turner said.

“Trying to eat and be healthy is almost impossible,” she said. “Moms are keeping it together, but they can’t do it all.”

Once a month, Turner and Estelle bring Preemie Moms Rock to the NICU at Sinai Hospital. Using donations and money raised through T-shirt sales, they offer parents healthy meals like chicken sandwiches, quinoa granola and fresh vegetables. They also offer willing ears.

“At first, the families are intimidated,” Estelle said. “But once we start talking and sharing our experience, they loosen up a little bit.”

During their most recent visit, the women spent about 15 minutes talking with a new NICU mom still in shock that her baby came early. Alex, now 11 months, Andrea, now 18 months, and Estelle’s second child, 6-month-old Anthony Jr., sat nearby.

The mother, who had yet to meet other preemie parents in the NICU, seemed comforted knowing Alex and Andrea were born at just 25 weeks and are now thriving.

“We’ve been there,” Estelle said. “We get it. We’re not counselors. We’re just talking about real-life experiences.”