The first time was just after he and his twin, Benjamin, were born in May 2010 at 25 weeks. The first time he cried, he popped a hole in his lung and doctors thought he wouldn’t survive.
He pulled through.
A week later, Jaiden perforated his intestine and was rushed into emergency surgery for necrotizing enterocolitis, a common gastrointestinal problem among premature babies that can destroy the intestines.
Kelly Beraun and her husband, Nicolas Beraun, refused to say goodbye.
“We said he could do it, he was a strong little boy and his mommy, daddy and brother needed him,” she says.
Jaiden pulled through. The third time, two weeks after birth, he developed another hole in his lung. Again, he pulled through.
Although they spent months in intensive care, the twins were lucky, Beraun says. They started walking late, their speech is a little delayed and they have chronic lung disease, but they could have had severe development problems.
Now, as the boys run around in matching plaid shorts, one wouldn’t know they weighed less than two pounds at birth. What Beraun and other parents know is that the worry that begins with premature birth never goes away.
“Every day in that NICU is a battle,” Beraun says.
To help parents facing the same tough road in intensive care, Beraun, along with her friend, Christina Baca, started a peer support group for parents with children in the neonatal intensive care unit earlier this year.
The goal is for parents to have consistent emotional support as they negotiate the NICU and beyond. The group focuses on peer support and Kristin Wallin and Stefanie Luna of Wallin & Luna Counseling Associates in Albuquerque, also help facilitate.
Baca lost her son, Justus, when he was born in February 2009 at 26 weeks and then developed sepsis 15 days later, an infection that is a high risk for premature babies. He died the next day. The group, Just’Cause, which the women hope to turn into a nonprofit, is named in his honor.
Baca’s adopted daughter Lydia was born at 27 weeks, the same day as Beraun’s twins. The two friends met in the NICU at the University of New Mexico Hospital.
“They were kind of our rock when we were going through it,” Beraun says, about Baca and her husband.
Beraun’s group is not the only one offering peer support for parents of NICU babies. Presbyterian Hospital has a group for parents, and the March of Dimes runs three support groups at Lovelace Women’s Hospital for moms, teens and dads. Each is divided in two groups – one for parents of NICU babies and one for parents of healthy infants.
While the NICU includes sick babies of all kinds, including those born with abnormalities, most are pre-term, says Dr. Andi Duncan, a neonatologist and medical director of Developmental Care and UNM’s Special Baby Follow-up Clinic.
In New Mexico, 12.3 percent of babies were born pre-term in 2010, or before 37 weeks, according to the New Mexico Department of Health.
In 2011, 651 newborns were admitted to intensive care at UNMH and 937 were treated at Lovelace Women’s Hospital. At Presbyterian Hospital, about 1,000 newborns are treated each year in the NICU.
The rate of premature births has remained steady since 1998, according to the March of Dimes, which focuses on ensuring all babies are born healthy. Beyond risks like prior premature birth and lack of prenatal care, “it is not something we really know how to prevent,” Duncan says.
At UNMH, most premature babies are born after 30 weeks. About 3 percent are born before 26 weeks.
Babies born very pre-term, called micro-preemies, stay longest in the NICU and are at higher risk for motor deficits, development delays and conditions like cerebral palsy, Duncan says.
All premature babies have higher risks for those conditions, as well as respiratory infections and feeding problems, Duncan says. When they start school, studies show that about half of premature children have problems with executive function, which includes mental tasks like planning, organizing and setting goals, she says.
While parents have children in the NICU, they are bombarded with information, say Baca and Beraun. Staff also talk to parents about managing expectations. For premature babies, a milestone might be turning down a ventilator so a baby can move toward breathing alone, Beraun says.
“When we were in the NICU one of the most frustrating things was not having any control,” Baca says. “It would have been encouraging to have someone support us through being confident in the decisions we were making. We had no idea what we were doing.”
Parents may feel isolated and grieve for the normal childbirth they expected, Duncan says.
“(In the NICU) they have a ton to worry about,” she says. “Having your baby in the NICU is actually a trauma.”
Before parents can even take babies home from the NICU they have to learn infant CPR and master oxygen machines.
In the first year of life, parents are advised not to take babies to crowded areas, such as a mall or day care center. A cough or cold can be much more serious for premature babies.
Managing expectations out of the NICU can also be tough, although Beraun says she is grateful for the support she receives from early intervention specialists who visit her at home. All premature babies should receive follow-up care, Duncan says.
Often family members want to help but don’t understand how different preemies are, Baca says. She has had people tell her she is lucky she missed out on stretch marks and the final months of pregnancy. Others have told her that every child needs germs and she is simply being overprotective.
In the Lovelace support groups, which are open to parents with babies at any New Mexico NICU, discussions often involve postpartum depression or the decision to return to work, says Brandy Van Pelt-Ramirez, state director of program services for March of Dimes in New Mexico. Groups are run by parents, but social workers attend and offer information about resources like low-cost or free counseling.
For parents, the NICU can become a second home. Peer support can help parents adjust to life outside it.
When Baca returned to her home in Chimayó with Lydia, she was still charting every feeding and diaper change, just like in the NICU.
“Old habits die hard,” she says. “When you leave the NICU it can be like you’re leaving your bubble.”