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10 Things Not To Say To Parents Of Preemies
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
Several of the respondents made reference to the trauma of having a premature infant. Our research. and that of others. that he was born so early?” 6. Dr.” 10. 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. Richard Shaw. “When will she catch up?” 5. broad impact from insensitive remarks. “What did you do. “He’s so small!” 4. “You’re so lucky that you didn’t have to go through the end of pregnancy!” 2. .” 9. a Stanford professor of psychiatry and pediatrics. may last many years. drawing on the report and multitudes of comments in their discussion strings. has also shown that these symptoms. Of course.boiled their insights down into their top 10 don’ts. “You’re just being paranoid about his health. if you consider that parents of preemies already tend to be under unspeakable stress. we’ll also share their top 10 most welcome remarks. if not recognized and addressed. and have an impact on the well being of both parents as well as on their developing child.) WHAT NOT TO SAY 1. you can get rest at night!” 3. “Everything happens for a reason. the trauma stems mainly from fear for the child and the merciless “NICU roller coaster.” 7. “Now that you have her home and off all that medical equipment. “She needs to be exposed to germs to build up immunity. everything will be fine. Unfortunately. But the Inspire report documents surprisingly deep. (At the end of this post. “At least. “He’s how old? My child is the same age and twice his size.” not jerky remarks. with the baby in the NICU (Neonatal Intensive Care Unit).” What harm can an insensitive remark do? Quite a bit.” 8. writes: The birth of a premature infant is an extraordinarily stressful and often traumatic experience in the life of a family. 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. while the concept of postpartum depression is now very well recognized in the medical profession. In an afterword to the Inspire report.
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. You never know when the apnea monitor is going to go off. She has personally experienced the post-traumatic stress that Dr. the company that manages the preemie network among 160 online patient support communities for a wide variety of diseases. The idea for the survey came from Inspire. “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. and a fifth lost important relationships as a result. said Deb Discenza. 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.” the report said. she said. You never know when you’re going to have to call 911. “We saw this topic was marbled throughout so many discussion strings on the preemies community. who moderates the Inspire preemie community of nearly 10.” . “That roller coaster keeps going up and down. the community’s members hope to give other parents “the chance to have a better experience.” emotions of the parent. Many parents feel passionately about it.” By using the report to help sensitize the public.000 members and has been active in the preemie world since her own daughter was born early seven years ago. “You never know when the hospital’s going to call the house. she said: flashbacks of NICU alarms and fears well after bringing her daughter home. Shaw describes above. There’s so much focus on the baby that there’s no chance to validate the feelings and “That roller coaster keeps going up and down.” she said.” said communications director John Novack .
so you don’t feel like no news is somehow bad news. Deb said: “They feel like they’ve failed and done something wrong to cause this.Those emotions often include the feeling of being judged. 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. 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. “Sometimes it can come across as a little unintentionally condescending.” Sometimes. says that training helps steer nurses away from certain types of remarks that they might otherwise think can only be helpful. “Just because they don’t respond the way we expect does not mean they’re in denial or didn’t get it. That’s not a bad thing but it’s something we want you to know.” despite all facts to the contrary.” Now back to our initial question: Congratulations.” she said. less-eventful slog. because “it minimizes the parent’s concern rather than validating that they’re worried. 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. Cheryl Toole.” and in fact. parents are likely in for a long. and so repeat it over and over to try to get through. and providing better information is a way to fight it.” “You never know when the hospital’s going to call the house. and to explain that after an intense initial one to three days in which the baby’s condition tends to become clear. nurse manager of the NICU at Children’s Hospital Boston.) “Don’t worry. Part of the problem is that people simply tend not to know much about prematurity and life in the NICU. who is the author of “The Preemie Parent’s Survival Guide to the NICU. and obviously they’ve come a lot . Also. You never know when you’re going to have to call 911. “it’s just that everybody has a different pace of coping.” Again. Cheryl said. when there is bad news.” Cheryl said. Deb. (Read her lovely editorial on the ideal NICU here. it’s no big deal.” -”You need to be patient. it can stress a parent out more. You never know when the apnea monitor is going to go off.” Of course that’s meant to be calming.” -”It’s important that you understand how sick he is. They include one on life in the NICU and another on the excitement mixed with anxiety of the baby’s homecoming. it’s meant to reassure. It’s just a slower stage. “There’s this weird stigma out there. A better option. Even health care professionals must navigate the emotional minefield with care. they haven’t understood it. but “you’re always going to be worried when it’s your child. we see this all the time.” also offers free handouts here on her “Preemieworld” blog to help parents explain what they’re going through to others. or no? Cheryl said that the Children’s NICU does not congratulate per se. staffers might worry that because parents are not reacting with obvious distress.
please share your own stories — can anybody top my monkey baby? MORE POSTS ABOUT Medicine/Science Personal Health Breaking: Patriot Ledger Reports Steward To Buy Quincy Medical Center The Patriot Ledger’s Jack Encarnacao reports here: A for-profit investment group that recently purchased eight hospitals in Massachusetts has reached a deal to take over the struggling Quincy Medical Center.” 5. “This experience must be very challenging. but I am thinking of you and your baby. “Tell me about your baby.” 10. Day 2 view all Medicine/Science posts . a Boston-based company established last year … Read More CommonHealth Tuesday On Radio Boston: The Health Care 'Triple Whammy' Health Care Chiefs On The Spot: Cost Trend Hearings. “How can I help?” (Or better yet. 8. “Can I drive you to and from the hospital?” 9.” 3.) 4.earlier than expected.) 6. “Tell me what’s going on with her medically. Steward Health Care System. “I’m available to talk” — indicating what you’re really offering is to listen. “He’s beautiful — he looks like you” (or the other parent.” Readers. Others are offended because no congratulations are offered. “I’ve brought you a meal. offering specific assistance. Congratulations! (Though this is somewhat controversial: some parents are offended at being congratulated when their babies are very ill.” 7. “I don’t know what to say.) 2.” The congratulations question also heads our top 10 list of remarks with the Inspire community’s seal of approval: WHAT TO SAY: 1.