Bad Mama


Picture of a child with Arthrogryposis
October 24, 2007, 6:06 am
Filed under: Disability, Peanut, Photos, Pistachio

I am so tired of reading about parents who were told by their doctors to terminate pregnancies of kids with arthrogryposis without any explanation of the degrees of severity of the condition, or the fact that measurements can be off on ultrasounds. Yes, you can have a child with such severe AMC that they cannot survive – it isn’t uncommon. But you can also have a kid that not only survives, but thrives. For instance, my kid is already the object of a crush. She has a little boy in preschool who absolutely must give her hugs before she leaves school every day. And it isn’t the “naughty” boy, either. Which is probably why she doesn’t seem to care all that much.

Anyway, the post title is from the Google searches I get on a regular basis. I will not ever deny that having a child with physical disabilities is difficult, even with a child like mine whose challenges are in the “moderate” range. But it is no less rewarding that parenting any other child, and, I think, often more so. Will she suffer because her legs don’t work right? Of course. She already has. Is it unbearable suffering? I’m pretty confident saying so far, no. In fact, she’s a ridiculously cheerful kid the vast majority of the time. And there are benefits too. For instance, I won a contest for the grossest baby story. Even without looking at the names, I’m pretty sure you could guess which story was mine.

I didn’t always know this. I can’t blame any parent for being terrified, and thinking they can’t do it. But the doctors should know better. They know their measurements aren’t always perfect. And if they can’t imagine that parenting a child with a disability can be okay, they have no business advising anyone to terminate a pregnancy when the parents have no idea what it means to be that parent and no other guidance whatsoever on the subject. Frankly, I think Dream Mom’s blog ought to be required reading in medical school for anyone who will deal with disabled children or their parents. While I am quite sure she wishes her child did not have the diagnosis he does, I am also quite sure she never wishes she didn’t have him. And she writes more eloquently of her love for her son than anyone I have ever read.

When we went back to the perinatal center for Pistachio’s ultrasounds, I took Peanut as often as I could. I wanted all those techs, doctors, and genetic counselors to see her. This is what it looks like. You terrified us for no reason, gave us PTSD to the point that I am willing to have an unmedicated vaginal birth rather than go through another c-section and my husband is looking into getting a prescription for tranquilizers and anti-nausea meds just to be present at this birth, because your measurements were off. The only possible way you can make up for it is to not do it to anyone else. You can find materials to hand out that focus as much on the two-thirds of children with the diagnosis of arthrogryposis that do well, instead of only the one-third who don’t, for instance. You can discuss the fact that sometimes you have been wrong. That isn’t giving false hope. It is presenting a full picture to people who have just had their lives turned upside down. Can you imagine what it would be like to have terminated a pregnancy for AMC and then, later on, find my blog or amcsupport.org, unless you knew that the information you were given about your child’s future quality-of-life was correct?

I know this seems to have come out of nowhere, but it was actually triggered by a news story that showed up in my blog feed search about a little girl in kindergarten with AMC that just started walking after a new surgery for her scoliosis. No one had thought she’d ever be able to walk at all, but she now walks better than Peanut. Her parents had been recommended termination. Go watch the video in that link and tell me how the doctors who did that can live with themselves.

I do want to make something clear – this isn’t about being pro-choice to me. I am adamantly pro-choice, probably more so than before I had Peanut. If we had been given the information we were given at 20 weeks instead of 36 weeks pregnant, and had we known that information to be accurate, we would have terminated the pregnancy without regret. My problem is the lack of understanding, both of the limitations of the science and of the realities of parenting a child with a disability. Termination should not be “recommended”. It needs to be presented as an option when appropriate, along with as much information about support systems in place for parents and children when that isn’t the only choice. I can tell you from experience that isn’t necessarily what happens, even for parents like us where termination wasn’t an option.

I need to stop here, because I have not had enough sleep and I am contracting again. I get to do a 24 hour urine test today. Yesterday I started swelling up again and while my blood pressure wasn’t any higher, apparently some other test wasn’t so good (like, I put on two pounds overnight and 4 pounds in the previous four days?) and I got a phone message that I needed to do this today. They don’t even want me to get up enough to drive over and pick up the jug. So maybe you’ll all get lucky and I’ll have a little time to post a belly shot or two, now that I have replaced my broken camera. And if something happens, someone will post here, so if I don’t post later it isn’t necessarily because anything happened other than I took a nap.

About these ads

18 Comments so far
Leave a comment

As an adult wheelchair user who is also in medical school, I completely agree that doctors need to broaden our perspectives on disability! Many times during my clinical rotations I’ve felt that my supervisors could not see the essential wholeness, healthiness, and happiness of our disabled patients. I work to be appreciative of every patient’s strengths and conscious of his or her gifts.

Comment by beep

Brilliant post. Thanks.

(I’d say something more pithy, but I’m really tired today.)

Comment by mimiboo

you re correct. and eloquent as always. peanut is lucky to have an advocate and parent like you.

Comment by Dana

i am only hoping that my kid is that cute and that happy.

Comment by betsyl

That baby story is seriously gross! Thank you for writing this. I know very little about what it’s like, but from my tiny and much less intense experience with a false positive for Down’s, there are a lot of troubling aspects to the way medicine deals with situations that fall outside the range of “normal.”

There’s an interesting discussion at the NYTimes site (http://well.blogs.nytimes.com/2007/10/22/when-doctors-steal-hope/) about how doctors deliver “bad news.” It’s mostly focused on end-of-life stuff, but I thought there were some parallels with your remarks in some of the discussion.

Comment by elizasmom

Let’s just say that I wish I was as confident and bold as Peanut… and I’m 26!

And really, seconded on all points. I’m pro-choice–but also a big supporter of disability rights/culture. (One of my favorite PostSecrets ever said something like, “Kiss my ass, Fibro! I’m going to have a good life anyway!”) Still… I wish abortion was suggested less frequently. It’s good to have the option, but I still think ending a pregnancy should be a last resort. Raising any child has its challenges.

Comment by Clover

BadMama, we did the same thing during our second pregnancy–we brought our son to a lot of the appointments, partly so the medical folks could see how comfortable and happy we are with the outcomes so many doctors warn against (without really knowing what they’re talking about). It was pretty hard for the genetics counselor to be grim and portentous about “rare chromosome disorders” when Jake (who has such a diagnosis) was smiling and laughing at him, reaching for his tie, tapping on his desk, etc. !

Comment by Penny

This was a wonderful and thought provoking post. I have now 2 close friends who were told to abort. One turned out to be 100% totally normal, the data the doctor had based his decision on was due to human error of the person doing the ultrasound. The other had a heart defect and yes, she needed surgery when she was 3 months old, but came out of it with flying colors and is now a very happy and mobile 2 year old. I know that some cases are not as fortuitous that this (and your story) but man, it doesn’t inspire confidence in the doctors, does it?

Comment by Meredith

Your little Peanut is adorable!

Comment by NaeNae

A little late, but just found your blog recently and reading to catch up.

I couldn’t agree more with your post. After a 9 week ultra-sound, I was scheduled an appointment with a genetic counsellor, who advised use that our baby had a “cystic hygroma” on it’s neck which would “in all liklihood mean that your baby has either Down’s or Turner’s syndrome if it’s a girl. We suggest you terminate your pregnancy as NOTHING GOOD CAN COME OF IT!!!” Long story short we did not terminate, I had many more ultra-sounds to track the progress, was told at 6 months ultra-sound that our baby had “spina bifida” and was sent to a university teaching hospital that is attached to the “Childrens Hospital” that we were now told we would have to deliver at because of the “spina Bifida” Went there and had an ultra-sound that lasted more than 1.5 hours with someone new coming in each 15 minutes or so and having a go at the ultra-sound. Finally the new Dr who would be in charge of delivery and care of our child because of the “spina bifida” and “other unknown anomolies” comes in and does the ultra-sound himself. After about 15 minutes, he looks at me and says. “Denise, there is absolutely NOTHING wrong with this baby, I don’t know and can’t speak for all the others, but remember this for next time, an ultrasound is only as good as the Doctor who reads it”.

Believe me, I have never forgotten those words and I find ways to apply them to other experts and their assumptions. Our daughter was born at 41 weeks, all 8lbs 4ozs of her and without a single thing that could be called “wrong” with her.

Even if she had a disability why should someone ever tell you that “nothing good could come of it”. Obviously the love you share with your child is “the good that can come of it” and what more really should there ever be than that.

Thank you for sharing the love you and your Peanut share each day and I must say she is an absolutely beautiful girl. (Congratulations on your new baby!!)

Comment by Denise

iam 11yearsold and i have arthrogryposis in the elbow i didnt ask for it it just happened, i grew up really fast with my period at 8,and having changes in my body which wasnt very pretty, i dont have any friends not even 1 iam looking for any kind of friend with arthrogryposis or any other disability i get along well with children,i love babies even though they cry, everytime i hold a baby they stop crying even if they dont no me, its amazing even animals trust me i would love to have a friend with arthrogryposis or any other disability

Comment by monique johnson

Hi, Monique.

Sweetheart, there is nothing wrong with you! You keep your head up, do well in school, and be kind to people. You will make lots of friends in the future. Kids are mean. I, too, have arthrogryposis and I’m now in my early 40′s with two beautiful children. I am college educated and career oriented. I do well for myself despite my disability. You will too!!! Never look down upon yourself and keep your head up! I always told myself that I have arthrogryposis for a reason. Who knows what that reason is, but I never pity myself even on the days it’s hard to get around. I adapt! You will too. Email me whenever you need a pick me up!

Lisa

Comment by lisa

Great post, my 4 yr old son has Arthrogryposis, he just started PreK, and is doing great. The doctors told me he would never walk, feed himself, or really function indipendantly, BUT THEY WERE WRONG! He is VERY self motivated, and completely functional. He is my whole world, and while it is difficult raising a child with a disability, he has changed my life completely, for the good.

Comment by Brittany

my daughter was told at her 20 week scan there was something wrong with bAby, after several test and an amnio it was discovered our little man had arthrogryposis, then at 25 weeks the doctors advised he would never lead a normal life. as he had contractures, in he’s feet and hands therefore it was only going to get worse, so unfortunately she was advised to terminate. so trusting the doctors she went ahead and terminated our little man at 25/5 days. it was absolutely heartbreaking. that was only 3mths ago. now reading all these stories it really makes you wonder weather those doctors were right. we no he definately had arthrogryposis but we were not told of how many little 1s can go
on to lead a normal life with the proper intervention. all i can
say now is i wish we had of done more research, thankyou very much for your information, i hope more ppl think to research instead of just listening to the doctors. im not saying they were wrong it just would have give us another point of view. thankyou from the bottom of my heart i hope this helps other ppl in future. good luck and god bless every1..

Comment by rhonda wallsh

You are giving me great hope and strength to continue my pregnancy.

I was told that my baby is now a month off in growth (baby measures 17wks but should be 22wks) and my baby will be born with a disability called arthrogrypoisis. Seen lots of ultrasound visits all recommend abortion. As I seen more opinions from other 20+ years experienced ultrasonic doctors, stories were changing. One says I will need c-section and baby will be completely disabled. Other says legs will be disabled third says the joints will be permenant unmovable.The doctors told me baby would never walk, feed herself, or really function indipendantly,and stories go on and on. MY HEAD IS GOING TO EXPLODE. But baby does not move. hands and feet are always changing positions each ultrasonic visits.

I decided to keep the pregnancy going and praying day and night the doctors are wrong.

Thanks for posting and god bless.

Comment by Shabana

Admiring the hard work you pput inro your site andd in depth information you present.
It’s nice to come acrdoss a blog every once in a while that isn’t the same old rehashed material.
Excellent read! I’ve bookmarked your site and I’m adding your RSS
feeds too myy Google account.

Comment by miniature dachshund back problems

i have arthrogypossis i dont do to well with it i try not to be negative im 50 now can some one tell me how to deal with this condition please i barley have made it threw life i was told disabled at birth just 15 years ago but i worked half of my life now i just make 845 monthley i lost moste my self asteam how does some one make it on that and live i just want to spend the nex 20 to 30 years trying to do somthing and to make up to my two kids is this posible any coments woud be great i really dont have much of a saport system here im not t looking for a hand out just a helping hand on what i can do to be part of something in life thanks
has any one have merey loss or afraid to go out with this conditi0on

Comment by Daniel Stallsworth

Daniel – Please visit amcsupport.org and join the forums. This group exists to bring together people who are dealing with AMC – either because they have it themselves or because a loved one does. I hope you find the support you need.

Comment by Mama




Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s



Follow

Get every new post delivered to your Inbox.

%d bloggers like this: