A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Saturday, April 20, 2013

Informing the Informer

As I am now a working Monday-to-Friday mother, my blog-writing clusters around the weekend, and if I have a couple of things I want to write about, then I'll stagger the posting through the week.

Well today is Saturday and I don't really have anything to write.
And then I was looking through some of the blogs I follow and found this article.


It brought back some of the questions that came up from the medical conference that I went to in the fall. I thought that I had blogged about my feelings, but I must not have. It was painful and very hard for me to sit through that day. And I do not recommend to any parent to go to a medical conference about something their child has.

The months that have passed since the conference have dulled the feelings and emotions I felt, so I guess now would be the time to write about it.

This is a conference that was directed at physicians, obstetricians specifically, and geneticists, but as a nurse I could go as well. One of the topics to be presented was neurotube defects and current research and news. They were going to talk about the MOMS study and I wanted to hear what they had to say.
I thought I would learn something.

I didn't. Or at least I didn't learn anything about spina bifida that I didn't already know. But I learned something about myself, and about how neurotube defects are seen by the medical, specifically the obstetrical population.

I heard all the medical information, all of the pictures about what forms in the baby and what doesn't, as well as when ect. A couple of doctors that I knew talked. And one of the speakers (the one talking specifically about the surgery in Toronto, was unable to make it).
Dr Church, our developmental pediatrician from Holland Bloorview was one of the speakers. She actually made me cry. She talked about the medical issues that kids have to deal with, but she had a positive spin to it (of course she would - she actually sees these kids). What brought the tears was a comment about how our kids sparkle.
They had another mother come and speak to the theatre full of doctors ect and talk about her experience with her child who was born with a serious medical condition (not spina bifida) and she was very positive and made the point that even though there is a lot of medical information and concerns, it doesn't make a child any less special.

There was a conversation during the conference about informed consent. With an argument back and forth about giving the diagnosis and making sure that parents are being given informed information. Some doctors people saying that giving just negative was enough, that is was true information, others said that it has to be combined with the positives and then there was the argument of how could you know either way. There is no such thing as a fully informed decision, and doctors are fooling themselves if they think they could provide such information.

And the doctor that actually gave me Nick's diagnosis was there. My heart was pounding and my blood pressure was rising and I knew that I had to stand up and say something.

So I did. I stood up and talked about how I received the spina bifida diagnosis when I was 20 weeks  pregnant. And we were told "this is what you child has, you have 2 weeks to decide if you want to terminate." That we were encouraged to terminate, that they said he would have all kinds of difficulties, and how Nickolas does have everything that Dr Church said comes with spina bifida. But he is happy and 3 years old and not anything like what you (as in the doctors) think he is.
My voice was breaking and I was crying a bit.

And I felt like a total idiot.
But Satisfied that I had made my point.
I told everyone at work about how stupid I felt almost breaking down in a room full of people. I think It was worse in my head than it actually was. And I will never see any of those people again.
And I got to feel good about what I did, and hopefully someone will rethink their approach.
Of course I vowed never to go to another medical conference like that, unless it was directed specifically to parents.

So back to the article that got me thinking about that day.
http://bloom-parentingkidswithdisabilities.blogspot.ca/2013/04/is-selective-abortion-for-disability.html (In case you didn't read it the first time)

The article has a number of points in it, including the perception of parents who chose on a selective abortion becaue of a prenatal dianogsis. But I am not raising an abortion issue. I am raising an information issue.

Doctors actually believe that they are giving parents all of the information to make an informed decision when they tell them about all of the medical problems their child may face. They truly believe that combining this with information from families who have faced the same problems would be biased (and their are not-biased, even though many obstetricians have never seen a child with said diagnosis). Not all doctors of course, but a surprising number of them.

The article by Andrew Solomon, published this month in the New Yorker; Medical progress, social progress, and legal regression talks about abortion, both the blog and the article brought up a lot of different points, what really hit home was about how doctors are actually giving the diagnosis and thinking that women are making a choice. A quote from the article
I do see a problem, however, in the speed with which women who have no prior exposure to the conditions in question are expected to make these decisions. Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child. It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement.
I have said all along how happy and thankful I am that I felt confident and comfortable enough in myself and my knowledge to listen to myself, to explore our options and make an informed choice. Along with Kyle of course. How if we had made a quick, scared decision we would regret it, and we would be missing such an integral  and positive part of our lives.

I'm glad that other people are recognizing that there is a need for informed choice, or at least for doctors to recognize that they are not providers of all of the information parents need. That it is not just us parents that are saying it.

Another aspect of what both articles talked about was the perception of physicians about parents choice. I am not going to address this, and I find it very depressing that someone would think that we as a family are less deserving of support because we chose to have our child. That is too much to handle at the moment. I would hope that at least the 10 obstetricians that I see every day and know me and Nickolas are able to provide a more informed picture to parents receiving a diagnosis.

I recognize every day that my life is better because we have Nickolas. We appreciate things, I have a new perspective I might not otherwise have had. And  I have no problem talking to a room of 90+ people, that fear of public speaking went out the window about 3 years ago!

I feel that a follow up letter may be in order.



  1. I and my daughter suffers from spina bifida. We are living in Turkey.
    We also have problems in orthopedic and urologic.
    I wish you all heathful. We also have a forum on our website.

  2. You are right, Spina Bifida doesn't make your child any less special! A lot of love, care and prayer has been perfect for parents with children with SB. Also if you have no problems speaking to a room of full people, have you thought about talking in Nickolas's class so children can learn more about it?

  3. I just stumbled on this one looking for more info on the issues we were talking about. It does crush. There was an article floating around lately telling the story of a woman who had received the diagnosis - the exact same diagnosis - and decided to abort, then the process, the aftermath. I could hardly breathe reading it. I'm glad you stood up. I don't know what I would do if I ever was confronted with the doctor that diagnosed King. I would want to punch him, but would probably just cry instead. They don't know.