"Oh, wow! He's so small!" It was a comment that Tina Brown heard every time she took her baby, Thatcher, out of the house.
Of course, Thatcher was small. He was born 12 weeks early, at 2 pounds, 5 ounces, because of pre-eclampsia, a pregnancy condition in which the mother develops high blood pressure and protein in the urine in the late second or third trimester. He spent 71 days in the neonatal intensive care unit, or NICU, before finally going home.
The comments were innocent enough, but on a bad day, Brown said they irked her.
"I don't think people understand the struggle when a baby is born so early," said Brown, 27, of Rockland, Ill. "A lot of people think, 'Oh they came out early, now they're fine,' but every day, it's a struggle for them to gain weight and survive. But I understand that people don't know unless they've experienced it."
For Deb Discenza, hearing, "Look, she's back from the NICU. You need to relax," from friends and family made her angry after her daughter, Becky, born 10 weeks early in 2003, finally came home.
But once a baby is home, many parents are far from relaxed.
"These parents lose any sense of a normal pregnancy," said Discenza, co-author of "The Preemie Parent's Survival Guide to the NICU." "They likely didn't have a baby shower, and that normal exciting baby feeling is tossed out the window and replaced with doctors appointments, home nurse visits, medical equipment going off, and wondering whether they should call 911."
"There's a whole spectrum of inappropriate comments while a preemie is in the NICU and when the baby is finally out," said Discenza.
Now, a new report from Inspire.com, an online patient community website, found that those insensitive or ignorant comments have a very real impact on the parents of premature infants. Out of 630 preemie parents who responded to an online survey, more than half said they had experienced insensitive comments about their baby, contributing to feelings of stress and isolation.
"We really felt like this is one of those things that you don't know about it until you're involved in it in a very personal way," said Brian Loew, CEO of Inspire. "We hope that the rest of the world will see this and understand that this is an important issue."
"We also hope that others will get a sense that their own experience is not all that unique, and they're not the only ones dealing with this," he said. "That can help enormously."
About 20 percent of the respondents said that they had lost relationships with one or more people who were important to them. And experts said women who gave birth to children prematurely were at a much higher risk of experiencing postpartum depression and post-traumatic stress disorder.
"For most families of premature infants, the birth of a new child is no longer just an exciting event, but a complex event that mixes joy with fear, concern [and] disappointment," said Dr. Ian Holzman, chief of the division of newborn medicine at the Mount Sinai School of Medicine in New York. "Most of their friends and relatives have little concept of either life in a NICU or the future uncertainties that face premature infants as they grow and develop. "
While most pregnancies last around 40 weeks, infants are considered premature if they are born before 37 weeks of pregnancy, according to the March of Dimes. Preemies are at increased risk for several medical complications, including respiratory distress syndrome, sudden infant death syndrome, intraventricular hemorrhage, jaundice, anemia and infections, because their immune systems are not mature enough to fight off bacteria and viruses.
"I would advise parents to be honest with their friends and relatives," said Holzman. "It is OK to show both love and concern. Parents must accept, to some degree, the inability of others to understand the situation. The same communication issues that arise when someone tells you they have cancer-- especially, if it is incurable -- apply in the setting of a preemie."
Some NICUs have already recognized and attempted to curb the problems that arise from insensitivity and inappropriateness by creating literature and counseling for the parents of preemies, along with their family and friends.
"Over the last few years, the health care providers are understanding that these parents are going through post traumatic stress disorder and should be treated as such, with lots of counseling through their baby's NICU course, as well as after discharge," said Dr. Siva Subramanian, a professor of pediatrics and an ob-gyn at Georgetown University Hospital in Washington D.C.
Subramanian said one of the first points of discussion is the guilt that often comes along with giving birth to a preemie, and it's important to make sure mothers and fathers realized that the baby was not born early because of something they did wrong.
"We also provide psychological counseling, especially for those whose babies will be staying for a longer time or are sicker, even though all parents whose baby is in the NICU, regardless how sick or not ,will feel a tremendous pain and suffering and grieving.
"After taking care of details about the course of their baby, we talk about how others-- relatives, friends or strangers-- will not understand what just happened to them and help them plan the coming days as to how to handle those issues with other," he said.
"Because we are all complex," said Holzman, "it is especially hard for friends and relatives to know how they should approach families of a premature."