Tuesday, February 26, 2013

Why blame Mom?















Historically it's been mothers who are blamed when children are born with disabilities. In earlier times we were thought to have sinned, while today the belief that women can prevent birth defects, by what we do or don't do during pregnancy, is rampant. And so is its unfortunate corollary: that women who give birth to a child with a disability caused it.

Public health messages that suggest mothers can prevent most defects by taking care of themselves during pregnancy abound.

According to the U.S Department of Health and Human Services website, a healthy baby is the outcome of these five steps:

Five Ways To Have A Healthy Pregnancy and Baby

1. See a doctor or other health-care provider from the start of your pregnancy.

2. Don't drink alcohol, smoke cigarettes or take drugs.

3. Eat healthy foods, including fruits, vegetables, low-fat milk, eggs, cheese and grains.

4. Take good care of your health and exercise sensibly.

5. Have your baby checked by a doctor or health-care provider right after birth and throughout childhood.

More current information (including the importance of folic acid and risks associated with obesity and diabetes) is listed at the Centers for Disease Prevention and Control

Yet we know from the March of Dimes that the cause of most birth defectsup to 70 per centis unknown. It follows that in most cases a woman can't control whether her baby is born with or without a disability (unless she aborts a child diagnosed prenatally). I bet you most mothers of children with disabilities followed the five tips above to the letter

So why are we led to believe our baby's health rests solely in our hands?

Consider this Healthy Babies Are Worth The Wait t-shirt I found as part of the Prematurity Campaign on the March of Dimes website.

What is the meaning of this, I thought? Women don't choose to have premature babies because they're impatient. Most preterm labour, in fact, can't be prevented. "Our analysis shows that the current potential for preterm birth prevention is shockingly small," said Dr. Joy Lawn of Save the Children, who led the first multi-country study looking at the causes of premature births and how to reduce them, published in The Lancet last November. So why suggest that women can control premature births?

Apparently the Healthy Babies Are Worth The Wait initiative targets women who consider scheduling a C-section before 39 weeks. "If possible, it's best to stay pregnant for at least 39 weeks," says the article.

This campaign won't touch the rate of premature births, which declined in only three countries of 65 from 1990 to 2010 according to The Lancet study. That's because asking your obstetrician for an early C-section isn't a major contributing factor.

But how will a mom of a preemie with disabilities feel when she reads that t-shirt message? What if a sibling of the child with disability reads the shirt and asks Mom why she didn't wait?

Yesterday I read about a new March of Dimes book called Healthy Mom, Healthy Baby in this New York Times' article: Too Many Pills in Pregnancy.

According to the Amazon description, Healthy Mom, Healthy Baby empowers "mothers-to-be... with more information and positive steps than have ever been available before to ensure both a healthy pregnancy and a healthy, happy newborn."

What?

If most causes of birth defects are unknown, "positive steps" taken in pregnancy can't guarantee a healthy baby.

The book is mentioned in an article in which the American Food and Drug Association estimates that at least 10 percent of birth defects result from medications taken during pregnancy. According to the article, a recent study shows inaccuracies in online information about which drugs are safe, which means women who choose the Internet over a doctor's consult may receive faulty advice.

That's critical information for women, and I can't imagine anyone arguing that we shouldn't carefully weigh the risks and benefits of medication use with informed doctors.

But don't suggest that healthy moms who do all the right things during pregnancy have healthy babies!

Titles like Healthy Mom, Healthy Baby feed this magical thinking. And they reinforce the popular fallacy that mothers of disabled children did something wrong to cause their child's condition.

In a recent piece called Pregnancy and blame on Conversations, an Australian news site, author Kathryn Knight writes about how simplistic public health messages about birth-defect prevention diffuse into the culture. We all know parents who've been been the recipientat school or on the playgroundof judgemental questions like: What went wrong? Didn't you get the test? Why didn't you terminate?

And that line of questioning isn't limited to an uninformed public.

I have a son with a rare genetic condition. The way a researcher described it, when my chromosome 8let's call it a green ribbonexchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped red-and-green ribbon, a minute piece was left out. That random error at conception caused his disabilities.

Yet to this day (he's 18) I'm asked by health providers for a detailed pregnancy and delivery history. "But the genetic condition occurred at conception," I will implore, as the 20 questions about my pregnancy are trotted out. "It had ALREADY happened!"

A blog in Three To Be's Parent Advocacy Link yesterday had a similar theme: 

"When Maclain was born, I blamed myself very heavily for a long time," writes Brenda Ferland Agnew. "It was my fault that one of my twins had died. I should have known sooner that something was wrong. I should have gotten to the hospital sooner. If I had done things differently both of my babies would have survived, and Maclain wouldn’t have been born so early. I could have prevented his brain damage if I had done something more. I carried this with me everywhere I went, with every move I made. It ate away at me, and kept me awake at night...

"A year and a half after his birth, we received confirmation that Maclain’s brain damage was caused by a condition known as Kernicterus. He was not treated for jaundice, and this was what caused his cerebral palsy and his hearing loss. We had suspected it for a few months, and after a visit to our neurologist, we got a letter that ruled out his brain damage having been a result of any intrauterine insults, or because of the Twin to Twin Transfusion...

"I was so angry that I had been made to feel by all the medical professionals, that my son had disabilites because of something I had done wrong."

We have less control over a myriad of things that can happen to a fetus than books like Healthy Mom, Healthy Babyor Five Ways To Have a Healthy Baby tip sheetswould have us believe.

Let's speak the truth about how much we don't know about the causes of childhood disability and, more importantly, how to prevent it. Let's tell the truth about how Healthy Mom can just as easily produce Unhealthy Baby, or Healthy Baby with a Disability (because disability is not necessarily synonymous with poor health!).

Every mom wants what's best for her baby. In most cases when congenital problems are found, it's not because of something we "did."

Reactions:

24 comments:

Fetal Alcohol syndrome is a notable exception. It is the leading cause of mental retardation and is 100% preventable.

Important points, all of them.

Very well said! This is a very informative article and in my opinion, a lot of moms out there will be able to benefit from the knowledge that you shared to us in this post. I agree on every word that you said here. Thank you for sharing. :)

Thank you for this important post, Louise. We blame ourselves enough without others chiming in. I think it's natural to go over every detail of a pregnancy and birth when a child is born with disabilities. Should I have done that step aerobics class at 24 weeks? Should I have had my hair coloured even though it was 'vegetable based'? I had to give myself a long, hard shake to stop thinking those thoughts. I find it hurtful and offensive that some would perpetuate these myths that we are in control of health, longevity and nature itself.

Most mums who do 'all the right things' or even most of the right things have healthy babies.
That's a bitter pill for those of us who don't to swallow.
It does make me particularly bitter that medical professionals, who should know better, perpetuate this.
Based on you and Cheryl writing about your experiences constantly being asked about your pregnancies, I now refuse to engage in this with HCPs.
They should know better. We have more than enough to deal with.

Thank you Louise for the true words. My son has Down syndrome. It doesn't matter what I did or didn't do during pregnancy, his disability was determined at conception, possibly even before that. Dealing with clueless medical professionals was not helpful as we struggled with the shock and grief of an unexpected diagnosis. They really need to teach this in medical school. Btw, I adore this blog, I always learn something or see from a new perspective, so thank you for that also!

While I appreciate your opinions on these campaigns...I do see a correlation between the health of the mother and the health of the newborn....disabilities are in my opinion a separate health issue ... which many times cannot be controlled for by a mom taking care of herself during pregnancy. However I think that many of these campaigns are aimed at those moms who are not taking care for various reasons...some out of ignorance...some have severe problems of their own.
There has to be a balance and definitely moms should not blame themselves for being the cause of their child's disability ...but that should not preclude campaigns that are meant to help prevent the preventable....and yes disability is not necessarily synonymous with poor health. We need campaigns to reach those most vulnerable and I would say that moms and parents reading your blog are not among them for the most part.

I was fortunate enough to have a Healthy Preemie at 32 weeks and I did everything I was told. My baby was measuring small for dates so we went for an Ultrasound which showed low level of placenta as well as baby was pinching the Umbilical cord and slowing its heart rate... We were told, you can wait but it will lessen the chance of survival. I really dislike when people blame the parents for everything.

Thank you for the great article :)

Louise, brilliantly said, as always. I do agree that the message is over the top, but I also think that, as Lorette said, these campaigns are largely aimed at a certain population, often underprivileged (and perhaps super-young) moms who need a handle on prenatal care because they are most at risk for not getting enough or even ANY.

I had a really similar response to one of the NYtimes Well blog posts a while back about preemies and near-term preemies. The blog post was about the health problems associated with near-term births, and the importance of avoiding non-medically indicated early births. However, the author immediately segued into a discussion of the health problems of very early/very small preemies. As a mom who gave birth to a very early IUGR baby because I was in danger of dying of severe preeclampsia, it felt very insensitive to be told that "healthy babies are worth the wait," no f-ing kidding.

Anyway, I clicked over hear from Motherlode and I'm really enjoying your blog.

I love this post. Thank you!
I was recently asked by several people WHY my son's arm didn't develop in utero. But why?? They wanted to know. I had to defend myself that it was nothing I did and it is just a random thing that happened. An unexplained statistic. As they looked at me with questioning eyes...

Thank you! I'm glad someone is saying this.

Hi GB -- you're right about FAS. But I think I would still argue that no mom intentionally harms her child -- in this instance an addiction compromises a mom's ability to do what is best. What do you think?

Hi Donna -- you're so right that it's not just our newborn baby's health that we are made to believe we're in control of. There's a whole industry set up to convince us we're not mortal and we can turn back the clock if we only "do" the right things. Thanks for writing!

Hi Anonymous -- thank you for writing.

What response do you get when you refuse to provide a pregnancy history? I have been told that my son won't be eligible for services without it. Good for you for stopping the insanity!

Welcome BethBG -- I hope we hear more about your son! Yes, education of medical students and doctors on this topic is critical. Thanks for writing!

Hi Lorette -- thanks for stopping by! I think public health campaigns can be more sophisticated in the language they use. For example, instead of "Healthy babies are worth the wait" which is offensive when the vast majority of pre-term births can't be prevented, how about:

Scheduling an early C-section can harm your baby

thanks for writing!

thanks for visiting and sharing your experience Terri!

thanks Ellen: it would be great to see a competition for a public health campaign that effectively reaches the target population without implying that all problems are preventable

Hi Mary -- thanks for visiting. You have an adorable daughter!!! Yes, if I was in your spot I would find that "Healthy babies are worth the wait" tagline a smack in the face!

Hi Meg -- so glad to see you here. I clicked to your blog and Gavin looks wonderful! Are you submitting to filmpossible this year?

I'm really sad to hear about how some people you know can't accept that there are random, unpredictable things that are very much a part of life. I guess it takes some people a lifetime to learn that truth.

i come from a different perspective, but have some of the same guilt. both of my daughter's were adopted. both of them have genetic disorders.
my big's was a complete surprise. at nine months we were at a geneticist and we got blindsided with the diagnoses of neurofibromatosis. i read (and read and read and read), and felt guilty that i didn't see things earlier, and if i had could i have prevented.....what? it happened at conception, not after birth. yet i still struggled.
with our little, we intentionally set out to adopt a little with Ds. she got really sick with a virus (that her big sister had, had, and had gotten at a story time she went to with a friend). as a result of the virus and an unrepaired heart defect, she ended up almost dying, intubated for nine weeks, and in the hospital for 96 days. we were in the hospital a year ago right now, and i feel like the worst parent alive because it caused her to be further delayed, and she lost the ability to eat by mouth.
yeap. guilt is so hard. even those of us who had no part in the creation of our children still find ways to blame ourselves. :/

Thank you for this post.
I am a mother of a child with multiple and complex birth defects that required life-saving surgery in infancy, will have another small operation at the end of the month, quite possibly more throughout his life. He is 18 months old. I did everything right. I had a wonderful OB and good prenatal care, took Foltx (a prescription with a high dosage of folic acid) months before I was even pregnant, we did extra testing at specialty clinics, I watched my diet and exercised, and had him before I turned 35. I would never have terminated, no matter what had been found in prenatal testing. My purpose for that was to determine what care he would need immediately after birth or even prior to that to improve his quality of life and chances of survival. His defects were missed completely.
I have a genetic flaw that makes me more prone to having children with genetic flaws. So his problems are because somewhere back in my family history some mutation happened that made this possible. Nothing I did or didn’t do could have made him magically fine.

There are certain relatively mainstream religions where people believe that if you give birth to a child with disabilities, that you are being punished for some past transgression. I am not speaking of ancient beliefs here. Not sure how our society will ever stop blaming the mother or we mothers blaming ourselves, when there are children today being raised under beliefs like those.