Home > ASAP, Grief, Stillbirth, Stillbirth Research > Shhhhhhh…..We can’t say the “s” word!!

Shhhhhhh…..We can’t say the “s” word!!

February 12, 2013 Leave a comment Go to comments

shhhhhby Lindsey Wimmer, MSN, CPNP

Take the poll!

If you have not yet read it, I encourage everyone to read the recent article in the New York Times titled, “Breaking the Silence of Stillbirth”.  This article is very well-written and puts into words many of the same emotions I tried to express in my last blog.   The author, Sarah Muthler, also includes a statement that jumped off the page at me

“Can we find a way to talk about stillbirth – to educate – without being fear mongers?”

When I discuss stillbirth issues with health care providers, they always tell me they avoid mentioning the word ‘stillbirth’ or any of the surrounding topics to their pregnant patients because “it will just scare them”.   In my mind, there are so many things wrong with this line of thinking that it just infuriates me.

First, I think it’s insulting that providers don’t believe that pregnant women are capable of evaluating risk – especially risks that may affect their health and the health (and life) of their child.  We offer screening tests for genetic disorders, we do ultrasounds looking for major anatomic abnormalities, we screen for signs of eclampsia and gestational diabetes.  For me, these are all scary to think about, but knowing they exist and approaching them in a proactive manner actually empowers women and their families.

Second, it is their JOB to discuss all health issues with their patients.  The health care industry exists because we need advice and assistance to achieve/maintain health.   In my pediatric practice, it isn’t fun or easy to talk to parents about the risks their child has of SIDS, autism, developmental delays, or any other condition.  But the risk and the reality of it doesn’t go away if I ignore it!  I feel I increase the risk if I don’t tell my patients everything I can so that they can try to reduce the risks when possible or be more vigilant if not.  It’s about education – not scaring.

Third, providers need to recognize that their patients know they can’t guarantee a perfect outcome – especially if risks are identified.  Performing colonoscopies on high-risk patients doesn’t make them immune to colon cancer.   It simply helps us identify if they have additional risk factors and attempt to intervene early if signs are noticed.  Similar examples exist throughout medicine in all specialties.  We understand an obstetrician or midwife can’t promise our child won’t be stillborn, but they CAN look for early signs and symptoms or be more vigilant with those pregnancies that have high risk factors.

Fourth, so many of the issues surrounding stillbirth stem from it being a taboo subject in our society – which begins at the doctor’s office!  There is little research because very few people are funding the research.  Funding seems to only follow those issues which our society addresses as a problem.  Very little patient education takes place because health care providers don’t want to talk to their patients about it and don’t feel they have good answers to all of the questions – again influenced by the lack of research.  Once a stillbirth has occurred, the families often receive many painful comments or later agonize over regrets because it is such a foreign concept to so many people.  Common knowledge about how to care for these families, how to respond to them, or how to advise them is lacking just as much as the prevention information.  Over and over again, stillbirth families tell me that they didn’t realize this could even happen.  I am one of them!

If you want to know what scares pregnant women – talk to stillbirth mothers and families about what they were told or what they experienced after their stillbirth. That is when families are given all the information, scary or not, to process in a very short time while also managing their acute grief.  Meanwhile, the families often can’t get past their first question –

“What is stillbirth and why didn’t I know about it?”

Immediately after being told our children have died, couples are often given “warnings” about what to expect next.  For example,  I was told I could be in labor for 3 days or more to deliver my child who had already passed away.  Some families are told they must now make very difficult decisions to save the life of the mother – that’s scary.  Telling a family they will now have to live with a hole in their heart for the rest of their lives and create a “new normal” because they will never be the same people again is very scary. It is devastating to a family when they realize many of their friendships or family relationships will now change or disappear because of various reactions to stillbirth and grief.  Telling a couple that any future pregnancy has a similar (and probably higher) risk of stillbirth can be scary.  And that doesn’t start to address those who are told they can’t/shouldn’t/likely won’t ever have another child – that their only opportunity to parent a living child disappeared due to a condition they didn’t even know exists.  Our society and health care professionals should put their energy toward preventing women and families from enduring pregnancy and infant loss instead of protecting them from the “S” word – stillbirth.

We know this can change because it has changed in other areas of medicine.  Not long ago, there was a similar societal taboo about mentioning certain body parts.  I have a great aunt who died from “female cancer.”  I can only assume it was ovarian, uterine, cervical, or breast cancer – but I don’t know.  That has changed.  Today, we have news anchors reminding women to do a monthly self-breast exam, we have vaccine commercials talking about the risks of cervical cancer, and we have Facebook posts warning of the signs of ovarian cancer.  We even have the entire NFL – an organization of men – wearing pink and raising money and awareness for breast cancer.   All of these actions (and many more) won’t stop cancer from afflicting all women in these ways.   It does however, educate us all, raise money for better research, inspire more women to be mindful of early symptoms or risk factors, and help provide better societal support if someone is diagnosed with one of these cancers.   It doesn’t have an entire population of women running around beside themselves with worry, but they are enlightened and empowered as much as possible.  The same can happen with stillbirth if we start talking about it!

What do you think?  Did anyone say the “s” word to you? 

If they had, would it have scared you or empowered you? 

Take our poll here – let’s see what everyone thinks……

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  1. February 12, 2013 at 1:43 pm

    I’ve filled out the questionnaire. It has amazed me how many people have said ‘since its happened to you, I’ve spoken to so many people who have said it happened to them, a friend or someone in their family’. Their stories just never get shared. We need to empower women to be aware, the guilt of not knowing enough afterwards is horrendous.

  2. February 12, 2013 at 3:50 pm

    Never heard the word stillbirth mentioned in decades, even when my fullterm son was born sleeping i didn’t even know it was called a stillbirth till i seen the word on the paperwork and i was taken aback! 2 years later and devastated, had i known the signs my son may be still alive…

  3. February 14, 2013 at 1:43 am

    This is a good article, and well written. From the UK, we have the same issues here. The consultant in the hospital after Maya died, said “Well it happens more often than you think we just don’t tell people as we do not want to scare them” Oh really, well actually if I had known, I would have gone back to the hospital after I went in for decreased foetal movements and you sent me home. I knew she was in trouble, but nobody listened to me.

    We all feel the same way. Our stories are different, but we feel the same way. Believe me, spending 3 years suffering with severe chronic post traumatic stress disorder was no picnic. I have lost 3 years of my life. I sat on the hospital bed googling ‘stillbirth’….. AFTER she died.. How crazy is that?

    I expected to lose her all the way through then sat down and put my feet up once I got to 36 weeks, I thought nothing else could go wrong. All the other SCARES were not behind me?

    No…. I was about to star in my own horror movie. A movie which would last for three years. Yes, that is scary.

  4. RaeAnne
    March 10, 2013 at 2:54 pm

    I want to start by saying no words can express my sadness for each and everyone of you. and if you live where you have no resourae to help you, to listen while you cry, vent or just talk and not just today, or tomorrow but whenever you need,there is a website called Star Legacy. i am sure you have already heard of them if you are this far and again I am sorry. You are not alone, I know those words don’t help either.
    These stories are too familiar. A family in my daughters small town (2000) had lost hers at 38 weeks, cord issues that could have been possibly prevented had she known the signs. 2/11/ 13 my daughter went in with low bp, high heart rate (126) baby had low 87, they said she was dehydrated gave her fluids, sent her home. 2/12 she sent me a text of him really being active bouncing all over, 2/13/13 pm I get a call he is gone, they are inducing her could be 2-3 days. I live 2200 miles away I arrive 2/14/13 an hour after she has delivered their first child who is stillborn. The cord was around his neck twice under his arm around his waiste and around his foot. With 3-d ultrasounds these things should not even exist. I, like some of you I felt 36 weeks she was home free, what could possibly happen? None of our lives will ever be the same and I have yet reached a new normal. I leave in three days to go home and I worry about how my daughter will be after I leave in the quiet all alone, till her husband comes home from work. I, like most of you, have googled and found articles by Dr.Jason Collins and am dumb founded at the signs…they were all there. They/we could have saved Braxtyn, the other mother could have saved her son in her arms. Had we known the signs THEN, had we known the risks THEN, Why didn’t we?why didn’t we know the risks they still haven’t told her risks are high of it happening again. All they say is ” your high risk we will monitor better next time” which pisses me off, she would not be high risked had we known the risk and signs. And I KILLLS me that it’s still happening after all the technology all the high tech stuff to monitor. And it will continue to happen. Is it just easier to tell a new mother “oh I am so sorry” than due a couple extra 3D ultra sounds late in the pregnancy? I am just sick over all the stories just like ours. He had low heart rate mother had high, her bp was low, he had hiccups all the time.the signs were there, and after another mother of an angel baby starts googling she will know, too late. But not before their live has crashed in around them, and feeling mad that other people’s life just continues and can’t understand when theirs has just stopped. Another mother going to her first week check up waiting in the waiting room full of mothers with newborns in their arms or mothers anxiously waiting the birth of their new addition. And here she sits…no baby, no future with the baby they waited for, for 9 months, usually by an angel mothers first week check, she has either just or will be laying her angel to rest.
    I have posted things on my Facebook to help bring awareness, and put the info for Dr. Collins and have been in touch with star legacy to try to bring awareness to the OB/GYN field if we can keep one of the 29000 babies from being stillborn, maybe then two, than maybe 29000 mothers and fatherswill go home with full arms and full hearts instead what ours and so many families had to go home to. Hugs to you all and I wish you peace in your new normal and a life of love and happier days.

  1. February 13, 2013 at 7:10 am

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