CommonHealth

She meant well, to be sure. My friend, one of the most supportive people I know, had come to visit me in the hospital as I cuddled my prematurely born son, who was still hooked up to various tubes and looking more like an alien fetus than a baby.

“Oh,” she cooed when she saw him, “he’s a little monkey baby!”

That 4-pound preemie, born two months early, is now quite a sturdy boy of almost seven, but the sting of that long-ago remark came back instantly when I read a new report titled “Insensitive Comments And Their Impact On Preemie Mothers.” Compiled by an on-line community hosted by the company Inspire, it aims to document the emotional damage that wrongheaded remarks can wreak, and help the public do better.

About 12% of American babies are born prematurely — a half-million babies a year —  posing quandaries to all who know the parents. If a baby is still facing myriad, potentially life-threatening complications, is it right to say “Congratulations”? On the other hand, will you offend the parents by not saying it? What about commenting on a baby’s size or looks? Mentioning possible silver linings?

At our request, nearly a dozen of the mothers in the Inspire Preemie Support Community have kindly boiled their insights down into their top 10 don’ts, drawing on the report and multitudes of comments in their discussion strings. (At the end of this post, we’ll also share their top 10 most welcome remarks.)

WHAT NOT TO SAY

1. “You’re so lucky that you didn’t have to go through the end of pregnancy!”

2. “At least, with the baby in the NICU (Neonatal Intensive Care Unit), you can get rest at night!”

3. “He’s so small!”

4. “When will she catch up?”

5. “What did you do, that he was born so early?”

6. “Everything happens for a reason.”

7. “Now that you have her home and off all that medical equipment, everything will be fine.”

8. “You’re just being paranoid about his health.”

9. “She needs to be exposed to germs to build up immunity.”

10. “He’s how old? My child is the same age and twice his size.”

What harm can an insensitive remark do? Quite a bit, if you consider that parents of preemies already tend to be under unspeakable stress. In an afterword to the Inspire report, Dr. Richard Shaw, a Stanford professor of psychiatry and pediatrics, writes:

The birth of a premature infant is an extraordinarily stressful and often traumatic experience in the life of a family. Several of the respondents made reference to the trauma of having a premature infant. Unfortunately, while the concept of postpartum depression is now very well recognized in the medical profession, the concept of a premature birth and a NICU hospitalization as a trauma is not one that is commonly thought of by health care providers. Research at our institution has suggested that as many as 40% of mothers may develop posttraumatic stress symptoms within the first few weeks of their child’s birth.

Our research, and that of others, has also shown that these symptoms, if not recognized and addressed, may last many years, and have an impact on the well being of both parents as well as on their developing child.

Of course, the trauma stems mainly from fear for the child and the merciless “NICU roller coaster,” not jerky remarks. But the Inspire report documents surprisingly deep, broad impact from insensitive remarks.

A majority of the 630 preemie mothers who answered Inspire’s online survey said that hurtful comments had added to their feelings of stress and isolation, and a fifth lost important relationships as a result. One sort of remark that particularly rankled: attempts to reassure the parents by discounting the health risks that the fragile children continue to face even after coming home from the hospital.

“More than 40% of respondents said that more often than not they heard people tell them that the babies ‘are fine when they are home from the hospital and that Mom is just being overly protective’ in expressing concern for the preemie’s health,” the report said.

The idea for the survey came from Inspire, the company that manages the preemie network among 160 online patient support communities for a wide variety of diseases. “We saw this topic was marbled throughout so many discussion strings on the preemies community,” said communications director John Novack.

Many parents feel passionately about it, said Deb Discenza, who moderates the Inspire preemie community of nearly 10,000 members and has been active in the preemie world since her own daughter was born early seven years ago. She has personally experienced the post-traumatic stress that Dr. Shaw describes above, she said: flashbacks of NICU alarms and fears well after bringing her daughter home. “That roller coaster keeps going up and down,” she said. “You never know when the hospital’s going to call the house. You never know when the apnea monitor is going to go off. You never know when you’re going to have to call 911.”

By using the report to help sensitize the public, she said, the community’s members hope to give other parents “the chance to have a better experience. There’s so much focus on the baby that there’s no chance to validate the feelings and emotions of the parent.”

Those emotions often include the feeling of being judged, Deb said: “They feel like they’ve failed and done something wrong to cause this,” despite all facts to the contrary. “There’s this weird stigma out there,” she said, and providing better information is a way to fight it.

Part of the problem is that people simply tend not to know much about prematurity and life in the NICU; Deb, who is the author of “The Preemie Parent’s Survival Guide to the NICU,” also offers free handouts here on her “Preemieworld” blog to help parents explain what they’re going through to others. They include one on life in the NICU and another on the excitement mixed with anxiety of the baby’s homecoming.

Even health care professionals must navigate the emotional minefield with care. Cheryl Toole, nurse manager of the NICU at Children’s Hospital Boston, says that training helps steer nurses away from certain types of remarks that they might otherwise think can only be helpful. (Read her lovely editorial on the ideal NICU here.)

Of course that’s meant to be calming, but “you’re always going to be worried when it’s your child,” and in fact, it can stress a parent out more, Cheryl said, because “it minimizes the parent’s concern rather than validating that they’re worried. Also, “Sometimes it can come across as a little unintentionally condescending, and the parent might be afraid to ask questions or raise a concern because they may fear someone might think it’s a stupid question.”

-”You need to be patient.”

Again, it’s meant to reassure, and to explain that after an intense initial one to three days in which the baby’s condition tends to become clear, parents are likely in for a long, less-eventful slog. A better option, Cheryl said: “You need to know that now it’s going to take longer periods of time for us to know the progress and direction that your baby is progressing in. That’s not a bad thing but it’s something we want you to know, so you don’t feel like no news is somehow bad news. It’s just a slower stage.”

-”It’s important that you understand how sick he is.”
Sometimes, when there is bad news, staffers might worry that because parents are not reacting with obvious distress, they haven’t understood it, and so repeat it over and over to try to get through. “Just because they don’t respond the way we expect does not mean they’re in denial or didn’t get it,” Cheryl said, “it’s just that everybody has a different pace of coping.”

Now back to our initial question: Congratulations, or no? Cheryl said that the Children’s NICU does not congratulate per se, but it does try to greet the family in a way that shows that “were validating that they have just given birth to this little person that they’ve planned on having, and obviously they’ve come a lot earlier than expected.”

The congratulations question also heads our top 10 list of remarks with the Inspire community’s seal of approval:

WHAT TO SAY:

1. Congratulations! (Though this is somewhat controversial: some parents are offended at being congratulated when their babies are very ill. Others are offended because no congratulations are offered.)

2. “Tell me about your baby.”

3. “How can I help?” (Or better yet, offering specific assistance.)

4. “This experience must be very challenging.”

5. “He’s beautiful — he looks like you” (or the other parent.)

6. “I’ve brought you a meal.”

7. “I’m available to talk” — indicating what you’re really offering is to listen.

8. “Can I drive you to and from the hospital?”

9. “Tell me what’s going on with her medically.”

10. “I don’t know what to say, but I am thinking of you and your baby.”

Readers, please share your own stories — can anybody top my monkey baby?

(A 2011 Favorite)