5
CommonHealth 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 a lien 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 lo ng-ago remark came bac k inst antly 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 do cument the emot ional damage that wrongheaded re marks can wreak, a nd help the publi c do better.  About 12% of America n babies a re born prema turely — a half-million babies a yea r — posing quandarie s 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 reque st, nea rly a dozen of the mother s in the Inspire Preemie Support Community have kind ly

10 Things Not to Say to Parents of Preemies

Embed Size (px)

Citation preview

Page 1: 10 Things Not to Say to Parents of Preemies

8/3/2019 10 Things Not to Say to Parents of Preemies

http://slidepdf.com/reader/full/10-things-not-to-say-to-parents-of-preemies 1/5

CommonHealth

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

Page 2: 10 Things Not to Say to Parents of Preemies

8/3/2019 10 Things Not to Say to Parents of Preemies

http://slidepdf.com/reader/full/10-things-not-to-say-to-parents-of-preemies 2/5

boiled their insights down into their top 10 don’ts, drawing on the report and multitudes of comments in thei

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.

Page 3: 10 Things Not to Say to Parents of Preemies

8/3/2019 10 Things Not to Say to Parents of Preemies

http://slidepdf.com/reader/full/10-things-not-to-say-to-parents-of-preemies 3/5

“That roller coaster keeps

going up and down.”

 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 tha

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

.

Many parents feel passionately about it, said Deb Discenza, who moderates the Inspire preemie communit

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 houseYou 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.”

John

Novack

Page 4: 10 Things Not to Say to Parents of Preemies

8/3/2019 10 Things Not to Say to Parents of Preemies

http://slidepdf.com/reader/full/10-things-not-to-say-to-parents-of-preemies 4/5

“You never know when the

hospital’s going to call thehouse. You never know 

 when the apnea monitor is

going to go off. You never

know when you’re going to

have to call 911.”

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.)

“Don’t worry, it’s no big deal, we see this all

the time.”

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

Page 5: 10 Things Not to Say to Parents of Preemies

8/3/2019 10 Things Not to Say to Parents of Preemies

http://slidepdf.com/reader/full/10-things-not-to-say-to-parents-of-preemies 5/5

MORE POSTS ABOUT

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. Steward Health Care System, 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, Day 2

view all Medicine/Science posts

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?

Medicine/Science