My doctor, my child: The response of the medical community to a mother who chooses to have a child who might be born with a disability

[This is the second post in a series highlighting a public dialogue heald at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here.]

The story you are about to hear you may find surprising in a number of ways; I know that I certainly did when I heard it on the night it was recorded. The contrast between the adversity faced by Wendy MacDonald and her family from the medical community upon making the decision to keep her baby early in the pregnancy and the support they received once it was finally time for Kyle to be delivered struck me as a very unfortunate demonstration of the power of linguistic framing. The shift in language from “miscarriage” to “premature birth” is a small one (the addition of one word, one syllable, and three letters), but it made all the difference for this family and the ability of the medical personnel involved to support them. I also found the adamant stance of her family doctor a bit perplexing, the sort of chilling paternalism that so often arises out of a misplaced belief that we alone have access to the knowledge of what is best for others. Perhaps even more than this I was surprised that this story had, and continues to have, a happy ending. For every Wendy MacDonald I am sure that there are many, many women who would be mothers and men who would be fathers that are bullied into conforming with the system because the system “knows best.”

Perhaps this video will make you a little angry, but it should also give you a little hope. Enjoy. Transcript of the clip beneath the fold.

Transcript

In the spring of 1994 I excitedly made an appointment to see my Doctor. This was a family Doctor who I had seen for over twenty years. We had, I thought, an amazing relationship. I felt that he was a wonderful Physician. Not only had he been my Doctor, but my parents, my Grandmother and many friends throughout the years. Personally, he had seen me through teenage years, marriage, childbirth, divorce, death of my Grandmother, single parent years, and finally a new marriage. This person was more than my Doctor. At times he had been my confidant and someone who I relied on for many things other than just my annual physical. So, as I walked into his office anticipating what this appointment was going to be like and what the conversation would be – you could not have removed the smile from my face or the spring from my step.
I had already told them I was coming to see him because I had taken a home pregnancy test and I knew that I was pregnant. My husband Blaine was with me – as the one thing he had always wanted in his life was to be a Dad. Wow! What an incredible moment this was. I knew when he walked into the room that something was amiss. He wasted no time in “small talk” and got right down to the bottom line. Instead of telling me things like when to start taking prenatal vitamins, what the due date would be – he informed me he had a date alright. He had made a date at the Royal Alex to terminate my pregnancy.

Several weeks before he had put me on a new medication. When he gave me the medication he told me not to drink alcohol and not to get pregnant. I assured him neither was a problem. (OOOPS!) He told us that there was no way to know if there would be a problem with the pregnancy but why would I want to take the chance. BESIDES he assured us, we now know we can get pregnant. We “deserved” better than possibly having a child with a disability. I think the word he actually used was “problems”. We should not put ourselves through that. I was stunned. I did not know what to say. I informed him that I was confused and needed to comprehend what he was saying. Realizing that I was upset – he suggested we meet again 4 days later. He assured me that I would come to my senses and see it his way.

Blaine and I left that appointment. I remember getting to the car – not even in it – and coming unglued. I could not fathom what had just happened to us. I was absolutely devastated. I spent the next four days getting as much information as I could. Basically, the same “warning” was on this medication as it was on a bottle of aspirin. Do not take unless the benefits outweigh the risks. Yet no-one, not even the Pharmaceutical company could tell us what the risks might be. When I returned to my Doctor 4 days later, I informed him that I did not want to end the pregnancy. He told me in an extremely condescending manner, “its clear to me that you have already bonded with this baby”. At that point, he informed me that he did not support my decision and he would refer me to another Doctor. He refused to have me as his patient any longer. I walked out of his office and – to this day – have never laid eyes on him.

That was the beginning of the journey. Only the first week – in fact.

I felt insulted that a Physician would think it was a bad thing to have bonded with my baby. I was appalled that he felt he had the right to make an appointment to terminate my pregnancy without even having consulted with me. Mostly, I felt at peace because I knew in my heart I had made the right decision. We were excited to be pregnant!

Within three weeks of leaving his office and finding a gynecologist I started to have complications in the pregnancy. I started bleeding and contracting at week 10. We were basically told that I was “miscarrying”. I should go home and stay in bed. Other than four weeks, I spent the whole pregnancy either in hospital or on bed rest at home. We were basically told that it was just a matter of time. When I reached weeks 18 and up I asked to be given medication to stop the contractions. The medical staff refused. They believed that this “miscarriage” which had now been going on for 10 weeks was “natures way”. It was too early in the pregnancy to try anything invasive. Besides, if they gave me medication it would only work for a short time and I wasn’t nearly far enough along for it to make any significant difference.

They never – NOT ONCE – respected my wishes. I cried a lot. I never knew I could experience such sadness. This is how it went – day in and day out. Week in and week out.
We were asked several times when they thought that “today was the day” if we wanted to see the “fetus” or not? Did we want a funeral – or not?
It would make it much easier for them if they knew in advance what our wishes were. So, in my mind – I planned a funeral – many times in fact. I thought about what this loss was going to do to me. What it was going to do to Blaine. I was devastated. At about week 23 of the pregnancy the conversation changed.
One day, my Doctor came into my room and said – you know – if you “miscarry” this week, we might be able to save the baby. There have been “documented” cases. So, we changed the language from miscarriage to premature delivery. From that moment on – I prayed for survival. I didn’t care about what challenges lay ahead. I just knew I wanted this baby to live. I asked again for medication to stop the contractions. They absolutely refused. The medical world wanted to dictate the outcome of this pregnancy. The first day of week 26 I ran into significant difficulties. The Doctors agreed there was a better chance for the baby to survive so on THAT DAY they gave me medication to stop my contractions and gave me a steroid shot to try and improve the condition of the baby’s lungs.

All of these days and weeks I had been laying there and they waited until a crisis to start treating me, with what I had been asking for for weeks. Then, they fought to keep me pregnant for another 24 hours for the steroids to work. This is the same medical team who just a few days before had refused to treat the contractions and asked me to plan my baby’s funeral. We didn’t make the 24 hours. Kyle was born at 26 weeks gestation. He was 1000 grams at birth. I do know that if the medical world had their way. Both at the beginning of the pregnancy and during the pregnancy – Kyle would not be with us. And boy would we and the world ever have missed out on something special. He is an amazing gift. Kyle has changed our lives in so many ways.
Kyle has taught us what is truly important in life. Our values are different. We have more compassion and empathy. We do not take things for granted, as we did before. Everyone in our extended family learned valuable lessons from Kyle. I believe we are better parents because of Kyle. We are blessed to live with someone who truly is happy to be on the planet. He is a person who demonstrates living life with a “glass half full”. As my sister has said many times – if your having a bad day – all you have to do is spend a little time with Kyle – he’ll make your heart sing.

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2 thoughts on “My doctor, my child: The response of the medical community to a mother who chooses to have a child who might be born with a disability

  1. Pingback: The Modern Pursuit of Human Perfection: The Full Story « What Sorts of People

  2. Pingback: Modern Pursuit of Human Perfection talks: now captioned « What Sorts of People

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