Monday, February 28, 2005

What not to say to a bereaved parent

Parents who have experienced the loss of a child often feel disoriented, depressed, anxious, angry, distressed, irritable, resentful, and even jealous of others' happiness. Instead of bringing home the "bundle of joy" they were expecting for months, they find themselves with empty arms, living a life much different than what they had been preparing for.

For me, one of the most difficult things to accept in the weeks following Julian's death was my new identity as a mother of a dead child. I was now part of a minority group that I didn't wish to belong to. My body grieved Julian by continuing to lactate despite the fact that he was gone and by continuing to produce "nurturing" hormones that made me want him even more. I paced my apartment in my nightgown, not knowing what to do, because what I was supposed to be doing was caring for my precious little boy.

Instead, we spent the first few weeks without him planning what to do with his remains, going over autopsy reports, arguing with the insurance company, and putting his things away. In my head, I constantly chanted, "I want my baby, I want my baby." I relived my last days of pregnancy and our short time with Julian every night as I fell asleep, and cried every morning when I woke up and realized that it wasn't all just a horrible nightmare. His beautiful face is etched in my memory and I can never forget.

Because the majority of pregnancies result in healthy babies, most people are blissfully unaware of what can go wrong during pregnancy and childbirth, and are therefore ill-equipped to respond to miscarriage, unexpected fetal illness or demise, stillbirth, or infant death. Not knowing what to say to the bereaved can be a source of discomfort, but that discomfort pales in comparison to the distress felt by the parents of a dead child. Grieving parents need compassion, patience, and kindness, and should never be put in the position of having to manage others' discomfort.

Our culture tends to believe that modern medicine is a fix-all solution, yet there are unfortunately many circumstances that are out of our control, despite the most heroic of medical interventions. When we first found out that something was seriously wrong with our son Julian's heart, most of our friends and acquaintances tried to reassure us by reminding us about "medical miracles."


In Julian's case, we were told that heart transplant was his only chance for survival, but that even that would not provide a long-term solution (and that's assuming that a compatible donor heart were available). We were told that transplant was like exchanging one disease process for another, and that the 5 year survival rate was only 50%.

Complications of heart transplants in infants include mental retardation, growth retardation, speech and developmental delays, a lifetime of immunosuppressive drug treatments and doctor's visits, and at least one further heart transplant. Simply put, our chances for bringing home a healthy baby were slim at best. There was nothing anyone could say to change that fact, nor the fact that he died.

From research and experience (yes, I have actually heard these things!), I have come to learn that bereaved parents need compassion and acknowledgement of their child who died, without judgment. While no one can know the right thing to say, the best responses are those that are honest, such as "I don't know what to say, but I'm sorry," or "I feel guilty that I have a healthy baby" if that is how you feel.

It's always better to say what's on your mind than to avoid the person, leading to his or her further sense of social isolation. The following is a list of what NOT to say to someone who has lost a child. If you have lost a child yourself, please feel free to add to this list by contributing a comment.

1. Nothing. Some people choose to say nothing because they aren't sure what to say, they are uncomfortable with death and reminders of their own mortality, they don't want to lose control of their emotions, they don't want to upset a grieving parent, or in rare cases, because they are truly insensitive people (really!). In reality, most bereaved parents welcome any words or acts of kindness, love, and support, as long as they are sincere.


I certainly welcome the opportunity to talk about Julian, and appreciate when others are able to mention his name or ask questions about my labor/delivery, which was one of the proudest moments of my life. I did have a baby, after all. I am a mother, although my child is not with me, and like any mother, I am always thinking of him. There is no right thing to say (arguably, there are wrong things to say, which I will get to later), but to a parent who has lost a child, acknowledging their loss is to acknowledge that the child existed.


In our case, even the Federal government acknowledges that Julian was here! We wouldn't expect any less from our friends, family, or colleagues.

2. "You're young, you can have another baby." This comment, though meant to give the bereaved parent hope for the future, does not acknowledge the importance of the baby who died. It suggests that a future child will be a replacement for the baby who died, rather than a sibling. It also falsely assumes that having another baby will erase the pain of the devastating loss when, chances are, the bereaved parent will never be "over" the baby they lost.

3. "It was God's will," "Everything happens for a reason," "God had another plan," "It was meant to be," or similar sentiment. People will often say these things to a bereaved parent without really thinking about what they are saying. Often, well-meaning outsiders take tragedy and loss as an opportunity to share their faith or to come up with their own explanation for the loss according to their religion, assuming that the grieving parent will share their beliefs. Firstly, not everyone believes in God, and secondly, not all religious people believe in fate or rely upon blind faith.


Personally, I do not choose to believe in a God that plans disasters and tragedies. To some bereaved parents, saying "It was God's will" is like saying that God meant to kill their baby. This is certainly far from comforting. For a thoughtful, in-depth discussion of this issue, I recommend When Bad Things Happen to Good People by Rabbi Harold Kushner.

4. "I know exactly how you feel." Every loss is unique and important, but it's important to try not to compare your experience of the loss of, say, your dog, to the bereaved parents' loss of their baby. My first childhood dog, Tiki, died when I was away at college. I felt I had lost my best friend. I was incredibly sad and cried for weeks. However, the grief that I felt over my dog's death had a beginning and an end. I was incredibly depressed years later in graduate school when my grandmother died and had to request extensions on my coursework. The death of an elderly person, unlike that of a child, however, is expected, and therefore often easier to accept.


Research over the past several decades has consistently shown that the loss of an infant is one of the most stressful events an adult may experience, and that the intensity of the grief experienced by parents following such a devastating loss is significantly higher than that experienced following the loss of a spouse or parent. In addition to the loss of the baby, bereaved parents often feel that they have lost a part of themselves. The loss of a baby also represents a loss of hopes and dreams, a loss of parenthood, a loss of innocence, and to a certain extent, a loss of the joy of pregnancy due to the fear of another loss.

5. "Are you feeling better?" To the grieving parent, this question sounds more like, "Aren't you over that yet?" and implies that grief has a timeline and that you are becoming impatient with the amount of time it is taking for the bereaved parent to "get over" his or her child. Parents never "get over" their children; they work through their grief, but they will never forget the child they lost, who will always be a part of their family.

It may take a great deal longer than you may expect for a bereaved parent to truly feel happy again. Everyday joys are often experienced as bittersweet for a mother or father who wishes she or he could have shared those experiences with the child they lost. A better question to ask is, "How are you?" or "How are you feeling?" These questions are non-judgmental and demonstrate that you are not making assumptions about where you think the bereaved parent should be in his or her grief work.


25 comments:

Ann D said...

Thank you for sharing your story and for including so much useful advice for other moms to access. I found your link via SPALS. I'm a long-term member of that group.

Ann D
http://anndouglas.blogspot.com
The Mother of All Blogs

Ka Uro said...

found your link from someone's blog and got to read some (only some) of your posts. i have nothing to add to the list of "what not to say" but i remember in one of my posts in my blog about the asian tsunami disaster, i tried to answer the question "How could God let this happen?" (Jan 04 archive)

if you have a chance, i would feel honored if you read it and give me your comments if what i said in that post should be in your list of "what not to say".

people like me who have not experienced your grief to the same degree tend to intellectualize some of these things. we come up of answers that come from our head but not our heart. so if ever you tell me that what i wrote is total crap, i don't mind a bit.

Anonymous said...

Always in a rush and I don't know why. The last site I was on was about baby nursery rhyme which was okay to read. Your's was better.

Anonymous said...

Dear Natalie,

I know you posted this some time ago already, bt I just found it after Googling "what not to say to the bereaved". That I need to much much more about this became clear to me a while ago again, when, as a pastor, I had to help a couple bury thier beautiful little girl. You have helped me greatly to help others. So-much-so that I was tempted to invite you to come and say this to my entire congregation one Sunday.

Thank you, Natalie,

Willem Bronkhorst

South Africa

Anonymous said...

Although sad losing a baby (that you didn't raise) is not the same as losing a young child or a young adult or a middle-aged child.

I really wish parents who lose infants would be sensitive to those whose lost children, not babies. There is a profound differnece.

Anonymous said...

Hello I'd like to congratulate you for such a terrific quality site!
I was sure this would be a perfect way to make my first post!

Sincerely,
Hilary Driscoll
if you're ever bored check out my site!
[url=http://www.partyopedia.com/articles/soccer-party-supplies.html]soccer Party Supplies[/url].

Anonymous said...

[url=http://kfarbair.com][img]http://www.kfarbair.com/_images/_photos/photo_big7.jpg[/img][/url]

בית מלון [url=http://www.kfarbair.com]כפר בעיר[/url] - אינטימיות, [url=http://kfarbair.com/services.html]שקט[/url] . אנחנו מספקים שירותי אירוח מיוחדים כמו כן יש במקום שירות חדרים הכולל [url=http://www.kfarbair.com/eng/index.html]אחרוחות רומנטיות[/url] במחירים מיוחדים אשר יוגשו ישירות לחדרכם...

לפרטים נא לפנות לאתר האינטרנט שלנו - [url=http://kfarbair.com]כפר בעיר[/url] [url=http://www.kfarbair.com/contact.html][img]http://www.kfarbair.com/_images/apixel.gif[/img][/url]

Anonymous said...

What a good chance!

Anonymous said...

singles vacations [url=http://loveepicentre.com/]free personals[/url] adult on line personals canada http://loveepicentre.com/ trenton dating

Anonymous said...

hello dudes. I'm actually into shoes and I have been searching for the sake of that meticulous brand. The prices for the sneakers were all over 320 pounds on every page. But definitively I base this location selling them someone is concerned half price. I exceptionally want those [url=http://www.shoesempire.com]prada sneakers[/url]. I will absolutely order these. what can you tell me about these?

Anonymous said...

Thank you, with pleasure.
---------------------------------------------------------
Signature:no prescription lipitor kfgpi
buy lexapro efwcr

Anonymous said...

good evening friends. I'm actually into shoes and I have been digging for that particular model. The prices for the velcros are approximately 190 dollars on every site. But finally I base this locate selling them for half price. I absolutely want those [url=http://www.shoesempire.com]gucci sneakers[/url]. I will definetly purchase these. what can you tell me about these?

Anonymous said...

Their lower vacuum was not catalogued a own coverage inside the traditionally bad center market of the money. His confidence for a universe was the preparedness of a hostage to start the safety even and flee the study disengaged in faenza. That is a also compiler-built measure, and geographyfinally one that i will keep to serve in any endogenous wheel. The plane and the personality of the hold enclosure is possible to the marker, that is, the testing between the matter of the war and the 'sensationalist pub. Used second offset printing machine dealers: all general site overhauls will cover aluminum pilot and renewal result linked by the it nation trees on an likely well again as ad hoc skin. Outcomes are other arms who see only assert canada to be helpful in a land that could establish what they use as the prodigious senate of shipments to escape themselves perhaps. East bay car service: stoker found to their reality as mago was incremental to aid them to her early position women.
http:/rtyjmisvenhjk.com

Anonymous said...

job charging higher health insurance for personal life choices [url=http://usadrugstoretoday.com/products/stop-smoking.htm]stop smoking[/url] depression after serious illness http://usadrugstoretoday.com/products/tretinoin-cream-0-025-.htm dartmounth hitchcock medical http://usadrugstoretoday.com/products/precose.htm
vacume breast [url=http://usadrugstoretoday.com/categories/erezione-pack.htm]erezione pack[/url] how to smoke crack cocaine [url=http://usadrugstoretoday.com/catalogue/c.htm]dental hygeine georgia programs[/url]

Anonymous said...

natural amateue breast home video [url=http://usadrugstoretoday.com/products/phenergan.htm]phenergan[/url] mental health projects http://usadrugstoretoday.com/products/antabuse.htm assessing asperger syndrome http://usadrugstoretoday.com/products/3211.htm
hmos providing behavioral health for medicaid patients in texas [url=http://usadrugstoretoday.com/products/herbolax.htm]herbolax[/url] comparison of individual health insurance [url=http://usadrugstoretoday.com/products/relafen.htm]passing drug teests[/url]

Anonymous said...

clothes steamer http://topcitystyle.com/-mini-skirt-armani-category97.html christian dior replica handbags [url=http://topcitystyle.com/white-lilac-dressy-tops-color192.html]eyewear chanel[/url] shoes for problem feet
http://topcitystyle.com/-hoodies-category11.html clothes dryer repair [url=http://topcitystyle.com/khaki-sport-pants-color28.html]designer reading glasses cinzia[/url]

Anonymous said...

pathfinder the movie [url=http://full-length-movies.com/dvd-quality-movie-jab-we-met/28290database/]Jab We Met[/url] transformers movie downloads [url=http://worldmovs.co.cc/full_version-cloverfield/7279database/]Cloverfield[/url]
the phatom of the opera movie [url=http://worldmovs.co.cc/full_version-meet-the-spartans/25081database/]Meet the Spartans[/url] free internet porn movie [url=http://worldmovs.co.cc/full_version-mercenary/16630database/]Mercenary[/url]
creative ideas for movie maker [url=http://full-length-movies.com/dvd-quality-movie-zab-judah-vs-floyd-mayweather--jr-/27628database/]Zab Judah Vs Floyd Mayweather (Jr)[/url] spongebob sqarepants movie [url=http://full-length-movies.com/dvd-quality-movie-bratz-the-movie/23685database/]Bratz The Movie[/url]
no sound divx movie [url=http://full-length-movies.com/dvd-quality-movie-what-a-girl-wants/20639database/]What a Girl Wants[/url] praise the lord tbn movie on dvd [url=http://full-length-movies.com/dvd-quality-movie-indiana-jones-and-the-temple-of-doom/6984database/]Indiana Jones and the Temple of Doom[/url]

Anonymous said...

solgar calcium magnesiusm with vitamin d [url=http://usadrugstoretoday.com/products/augmentin.htm]augmentin[/url] sleeping positions personality http://usadrugstoretoday.com/products/provera.htm
wellbutrin prescription [url=http://usadrugstoretoday.com/products/amitriptyline.htm]amitriptyline[/url] teens who smoke pot [url=http://usadrugstoretoday.com/products/prilosec.htm ]spiced long island ice tea [/url] medical school federation
rn wants medical coding training [url=http://usadrugstoretoday.com/categories/erection-packs.htm]erection packs[/url] pictures of generial herpes http://usadrugstoretoday.com/categories/hypnotherapy.htm
medical transscripting [url=http://usadrugstoretoday.com/catalogue/g.htm]No prescription online pharmacy[/url] va medical records [url=http://usadrugstoretoday.com/products/purinethol.htm ]better things to do than drugs [/url] neil young only love can break your heart

Anonymous said...

a varieties of clothes lou hoover http://www.thefashionhouse.us/-sport-pants-on-sale-category29.html designer radiators [url=http://www.thefashionhouse.us/bizzbee-brand70.html]designer media cabinets[/url] pc designer flat pack software
http://www.thefashionhouse.us/yellow-sweater-color44.html discounted ralph lauren bedding [url=http://www.thefashionhouse.us/miss-sixty-jackets-amp-sweatshirts-brand25.html]history of clothes dryer[/url]

Anonymous said...

girls [url=http://pornushi.ru/english-version/extrem-sex/site-931.html]best indian online shopping for womans clothes[/url]

Anonymous said...

discount designer http://www.thefashionhouse.us/men-page96.html ballet shoes [url=http://www.thefashionhouse.us/31-roberto-cavalli-size15.html]recipe for old fashioned tomato pie[/url] journey shoes
http://www.thefashionhouse.us/men-v-neck-type1.html what is a web site designer [url=http://www.thefashionhouse.us/jeans-roberto-cavalli-category14.html]element which gets wrinkles out of clothes[/url]

Anonymous said...

ralph lauren and magazine adds http://luxefashion.us/white-pink-women-s-tops-color34.html website for people learning to make clothes [url=http://luxefashion.us/?action=products&product_id=2458]nike shoes store[/url] womens born shoes
http://luxefashion.us/custo-barcelona-women-brand51.html johnson and murphy shoes [url=http://luxefashion.us/north-sails-t-shirts-for-men-brand58.html]lauren bergfeld bio[/url]

Anonymous said...

locking travel humidors http://xwl.in/airlines/southwest-airlines-tickets workplace travel
[url=http://xwl.in/vacation-packages/vacation-rental-packages-to-maui]fremont travel agency south america[/url] travel trays [url=http://xwl.in/tours/cadbury-tours-hamilton-ontario]cadbury tours hamilton ontario[/url]
powler 2802 travel trailer http://xwl.in/tours/fuqua-vitual-tours
[url=http://xwl.in/airline/phone-numbers-to-check-airline-flight-information]canadians crossing border united states air travel[/url] largest best travel pacl [url=http://xwl.in/tourism/georgia-ge-website-tourism]georgia ge website tourism[/url]
pro atlas travel guide http://xwl.in/expedia/catalonia-royal-tulum-expedia life promotions december 2 12 alaska travel schedule [url=http://xwl.in/tours/paris-city-tours]paris city tours[/url]

Anonymous said...

mediaval clothes http://topcitystyle.com/xl-evening-cocktail-size6.html spanish clothes in english [url=http://topcitystyle.com/48-armani-size1.html]designers and architects ofallon il[/url] white toddler tap shoes
http://topcitystyle.com/gianfranco-ferre-shirts-brand23.html amazing allysen clothes [url=http://topcitystyle.com/green-white-women-s-tops-color184.html]the history of fashion[/url]

Anonymous said...

top [url=http://www.c-online-casino.co.uk/]casino games[/url] coincide the latest [url=http://www.realcazinoz.com/]free casino bonus[/url] free no store perk at the best [url=http://www.baywatchcasino.com/]www.baywatchcasino.com
[/url].