Wednesday, January 18, 2006

Comment response

I didn't know that stillbirth was preventable?! What were you supposed to do to prevent it?!

There are many things that can be done to prevent stillbirth from occurring. Many of these things depend on intensive monitoring of the pregnancy after early detection of a problem (sounds like a slogan of heard somewhere...early detection is key).

Many stillbirths (and miscarriages for that matter) are the result of blood clotting disorders or other treatable conditions. We aren't tested for them until AFTER we have suffered a loss.

In cases of knots in the umbilical cord, and in many cases of cord accidents, a trained ultrasound technician should be able to see the development of the problem (knot, too short of cord, cord looped around a body part that could become compressed during labor). The sad fact is that many u/s techs are not trained to do this type of exam.

In my case, the case of ascending intrauterine infection, paying attention to the symptoms in order to accurately diagnose...and then treating with IV antibiotics...could have been successful. No non-stress test was performed on my baby to determine if there was a problem. I was a victim of a doctor who was too busy to pay attention.

There are SO MANY causes for stillbirth. There are SO FEW health researchers studying these causes and what can be done about them. It is as though the world has accepted the 1% risk as hunky-dory. To the tens of thousands of us who have had to suffer through a stillbirth experience, however, the lack of concern is astounding.

According to the National Stillbirth Society (and from my own experience), there is no uniform protocol for even finding out the cause of a stillbirth. Often, doctors and nurses just tell the bereaved parents, "Sometimes these things happen." Why is there no system? Why are we willing to accept this? If there is ANY means by which we could gain knowledge about the various causes of stillbirth, we should be MANDATING them in our hospitals.

An illustration of the lack of respect that stillbirth gets in the medical community...Almost 10 times as many babies are stillborn each year than die of SIDS. There is a massive public education campaign concerning SIDS. Nothing about stillbirth. Even taking into account the fact that the public awareness campaign for SIDS is responsible for the decline in numbers...where is the public outcry for stillbirth education?

The fact is that there ARE things that can be done to prevent stillbirth. We don't know them all because this area of women's health has received so little attention. But we do know some of them...and we should be taking advantage of them. Blood testing for clotting disorders, better ultrasound technicians (how many of us have had bad experiences with one of these? I know I have), doctors that are better equipped to LISTEN to their patients and pay attention (rather than crank us in and out of the office so fast they can't even remember why we're there).

I don't mean to sound like there is any one magic cure-all answer to the entire stillbirth epidemic. But a 1% risk of stillbirth is not acceptable. We should strive for better. And if we can find a cause...a way to prevent...even ONE baby from dying...then we will have made progress.

There are MANY things we can do to prevent stillbirth. Education is the key. Not treating women as though they are wilting flowers who cannot handle honesty about their own medical care is a major issue. How many times have I heard, "It's a freak thing...we can't treat every woman as a tragedy waiting to happen." Instead of advocating that women be provided information that will help them identify if they are at increased risk for stillbirth, we allow the medical establishment to gloss over it.

In fact, we allow the medical establishment to give women the false sense that they "don't need to worry about it" because it is so rare. How are we EVER going to make strides to eradicate this problem if we don't have the information? I'll probably never get struck down by cancer, but I know the things to avoid in my life to make the odds swing a bit in my favor. Why not the same education for women who may become pregnant?

Because 20,000+ dead babies a year is an acceptable risk...to allow women to walk around blissfully naive and not have to face the reality of the delicate balance between life and death.

Thanks for the comment Rach...it's very thought provoking and I hope I don't sound like a nut in responding to it in this way. Maybe I'm just bitter that I'm not one of those naive women anymore. But I don't think so. I TRULY believe that a little education could go a long way in this area. I think the psychological discomfort of women would be far less than people think. Women are strong...they can handle information. And if it helps to keep even one baby alive, then I say we should give it a try.

9 comments:

Sweet Coalminer said...

Catherine, have you thought about taking your stillbirth related posts down until after your lawsuit? Not that there's any ammunition here, but you may want to think about not creating more evidence. I don't know if your state is contributory negligence or not.

rach said...

That is really interesting. I remember knowing that stillbirth DOES happen, and asking my doctor about cord accidents and placental failure. I was obsessed. She kind of laughed and said, "Oh, that is such a RARE thing to happen...don't worry about it." But if it were to happen to ME, who the hell cares how rare it is? An omphalocele is a rare occurence. 1 in 7,000 babies. And BOTH of my babies had one. That's 1 in 49 million, the chances of two of my children having the same defect. So it no longer matters to me that an omphalocele is a rare birth defect. That is a meaningless number. I am now that number.

I hope you take further steps in getting this information out there. I would help you if only I knew how.

Every time someone is pregnant I almost find myself holding my breath until the baby is actually BORN and here. And you're right - people think that the mother of the child must have done something wrong - that it couldn't happen to them.

It IS unacceptable that it happens so much.

Will you be the ignition for change?

Rachel

Catherine said...

Thanks. We're a comparative negligence state. And I dare anyone to tell me I didn't act in a reasonably prudent manner...having visited both my OB, my family practitioner, and having called my OB in the two weeks prior to Alex's death to complain about my symptoms.

Holley said...

Big hugs Cathy.

I totally agree with you. Doctors need to focus on each patient and not treat us as if we were just bits on an assembly line.

People never get smarter or stronger if they are given no information.

lauralu said...

cath, i agree with much of what you say. more can be done. there are a plague of horrible sonographers out there. stillbirth is way more common than sids. but even the best efforts do not always save babies. my son's problems were diagnosed early and often, and monitored to the nth degree, and yet, in a matter of minutes, he was dead. there are limits to what can be done in utero (unlike with sids, which can be directly impacted by simple actions any layperson can take). and i'm not sure i agree with making more women more aware of the potential of stillbirth - why freak people out? why cause that anxiety (which is neither healthy for mother or baby)? i had enough worry as it was in my full-term pregnancy; if i had understood the potential for him being stillborn, i don't think i would have had any room left for the joy i did have with him.

i understand, though, if you want to remove my comment. it doesn't support your case, which i think is legitimate by the way. but i wanted to offer you another perspective to consider.

kate said...

I agree totally, Catherine. I am sure you were as shocked as i was when i found out how many babies died from stillbirth and how little research was done about stillbirth. I considered myself an 'informed' pregnant woman, yet i did not even know to do kick counts. Which is the only thing which *may* have saved Nicolas.

Laura, it is true that even with all the information existing, not all babies can be saved. I am so sorry that they could not help Hans even though they tried to monitor well. I don't know, in my case, if kick counts would have helped. But the fact is that i did not do them, so i don't have that piece of information, and i will never know. And it is a simple thing that could have been done, if anyone had thought to tell me it was important. If anyone had thought to tell me that yes, in this day and age, babies still die for seemingly no reason and the risk of that is comparitively high. 1 in 115 is a *lot* higher than the average risk of Down's, for example -- which is 1 in 800 i think? But i knew about Down's...

Sweet Coalminer said...

Catherine, I felt really bad this morning. I don't at all ever mean to imply that you were negligent, just that I'm sure you know the truth isn't always what comes out in court. It's our jobs to bend our evidence to suit our cause. I hope you didn't think I thought that. I know your doctor should have been more responsive and certainly should have given you more info.

Jill said...

Two things that immediately sprung to my mind reading this post is that 20000 people in any segment of society is a massive number. It is ludicrous that so many deaths can be ignored and I feel certain that the deaths of 20000 women, or African Americans, or Jewish men (etc..) would be met with panic and massive financial and academic resources.

Also, as Kate said, we know about Downs and yet we are routinely screened for it without mass panic ensuing. The fact is, is regardless of the tests, we still din't think it will happen to us until it does.

You are right. Blood clotting disorders, in my estimation, are probably responsible for a large number of 'freak occurrences' which we are told just happen without explaination. When we go to get all our other bloodwork done at our first appointments, why not do a full thrombo screen?

Anyway, information is power. I agree with what you say.

Windfall Woman said...

Wow....this is all news to me. I had no idea.