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.

http://bloom-parentingkidswithdisabilities.blogspot.ca/2013/04/is-selective-abortion-for-disability.html

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.

http://riddingfamily.blogspot.ca/2010/07/letter-wake-up-medical-professionals.html

The Letter - Wake up medical professionals!!!!

This is a letter that I started writing when I wrote my one year post. It got me thinking that complaining about it is not enough. I felt that I had to do something! When I feel the need to do something, to make a change when I felt that 'service' has been lacking, or I have been treated unfairly, I write a letter. And here it is!
I am not sure who I am going to send it to. I am thinking the Canadian Medical Assocation, Society of Gynecologists and Obstetricians, and Canadian Association of Midwives.
I am also encouraging all those other mothers who are as pissed off as I am - write. Write that letter that has been in the back of your brain for the last year, or two or more. Write to people who misrepresented spina bifida to you, and brought you to that dark place before you saw the light - what spina bifida actually looks like.
I am a strong beleiver in the saying 'the pen is mighter than the sword'. Yes cheesy I know.

Here goes:

To whom it may concern,


I am writing in the hopes of improving the experiences of someone who has been given a prenatal diagnosis of spina bifida and hydrocephalus. I have been thinking of writing this letter since the birth of my son, but kept putting it off, thinking it would not change anything. But the more I hear stories of other parents and their experiences; I decided I had to write.


My son was born with spina bifida and hydrocephalus on November 13, 2009. We got his diagnosis one year ago. This is a recollection of our experience.


July 16, 2009. This was the day I went for a second level ultrasound, 21 weeks pregnant and knowing that my baby was a boy and 2 weeks ago they couldn’t see his cerebellum. My IPS had come back negative so I tried not to worry. My regular obstetrician, Dr A, who was a co-worker, encouraged me not to worry. I spent 2 hours having an ultrasound by different techs and different doctors, all who did not tell me what they saw. Finally they told me I could go wait and talk to the doctor, and they gave me some pictures.


The doctor, Dr B, called me in, this was someone that I had never met before but was seeing me as a favour to Dr A. The conversation went “the ultrasound shows that the baby has spina bifida. You are 21 weeks along; if you want to terminate you have until 24 weeks. We will support whatever decision you want to do and if you want to terminate we can take care of that here instead of your own hospital if you want.” The doctor and I discussed what spina bifida was, a neural tube defect, which it was in the lower lumbar, upper sacral area of his back, which the ultrasound had showed. I was told that spina bifida meant being in a wheelchair, wearing diapers for life, being dependent on us, and intellectual problems. Then he said “OK I’ll leave you alone now and give you some time. There is a phone you can call someone and I’ll be back.”


This is what your baby has, you can terminate, this is the horrible things that your baby will be facing, and I’ll be back. I am an obstetrical nurse, but I didn’t have any firsthand experience with this, other than what he was telling me, and what I had learned in school – which was not much.


This is the last time I saw Dr B, who is part of a high risk pregnancy unit. Over the next two weeks we collected a lot of information about what spina bifida meant, and what to expect. My husband and I received valuable, research based information the next day when we saw the genetics doctor, Dr Chitayat, who provided us with up to date information and the support we needed. We were able to discuss neural tube defect, anticipated physical function, hydrocephalus and more. We researched online as well as contacted the Spina Bifida and Hydrocephalus Association of Ontario.


We were further referred to Dr. Rutka at Sick Kids, and Dr Biggar at Bloorview Kids Rehab who were able to show us what spina bifida was and what kids look and act like. Discussing spina bifida with doctors who knew what they were talking about, had worked with, treated and watched these children grow. They gave us a true picture of what life would be like if we continued with the pregnancy; which is what we decided to do.


After we had made our decision not to terminate, about 2 weeks later (at 23 weeks) Dr A pulled me aside at work, he wanted to talk to me. He said that Dr B had called to ask him to talk to me, he wanted to make sure that I was aware of what we were facing with a child with spina bifida. He said spina bifida meant paraplegia, total dependence, mental deficits, the child would be in diapers for life and we needed to think about how this would impact our lives and our older daughters life. He wanted me to reconsider our decision (not to terminate). I was very clear that I had researched spina bifida and did not believe this to be the case and would not reconsider.


For the rest of my pregnancy I had shared care between Dr A and the high risk clinic in Toronto, but not with Dr B.


This experience is by no means unique. In fact it seems to be common place. From discussing my experiences with other women and families in Canada and the United States there was a lot of commonalities in how we were told about spina bifida from family doctors, obstetricians, mid wives and perinatologists. My experience was almost word for word the same as women reported in online spina bifida forums, from families around the world, as well as a support group at Bloorview.


To me, this is scary, as I see that it reflects the outdated knowledge of the general medical profession about spina bifida, who are trying to inform others. I think this showcases the need for further education around the current experiences and expectations of spina bifida.


Our life with spina bifida has given us a happy and healthy son. He had surgery to repair the lesion when he was 24 hours old, and surgery to insert a vp shunt when he was 3 weeks old. He goes to physical therapy and gets catheterized regularly. We have additional doctor appointments and some extra worries, but anticipate a good and successful quality of life. We are confident that he will be able to walk, achieve social continence, attend school and become independent. This is not the picture that was painted for us, and is currently being painted by doctors who are telling families what a diagnosis of spina bifida is. They discuss archaic beliefs and outcomes about spina bifida and say it is fact. And parents believe what they are being told.


I am thankful I did not listen to what Dr B told us, and encouraged us to do. I am thankful I had the fortitude to seek further information and to educate myself and my family about spina bifida. I am saddened to think not every woman who is told such a scary diagnosis would seek further information, beyond what the obstetrician/family doctor/midwife told them, and the consequences of this. I believe that every woman has a choice, but an informed choice. Informed with current research and with reasonable expectations of what life with spina bifida and hydrocephalus entails.


Being on this side of a prenatal diagnosis I think it is bordering on incompetence to give out such negative and one-sided information about spina bifida. Doctors who do not understand about what life with spina bifida entails should not see themselves as being a reliable source of medical information to parents. I believe this is common through giving a diagnosis that is not fully understood by medical professionals who only deal with the healthy norm of the population.


I think there is an opportunity for valuable education for medical professionals to have updated knowledge about spina bifida. I propose you take this opportunity to think about how you can improve these experiences through current and accurate education.
Thank you for your time,


Amanda Ridding