I'm blogging this - originally published in the Catholic Leader - because it is thought-provoking, wtitten from the heart, and attaches a meaning to the word "choice" which probably doesn't get enough exposure in the mainstream media.
I'd like to dedicateit to the many parents of kids with Down syndrome that I've taught during the last 40 years.
Making the wonderful choice for life
Published: 27 February 2011
I SPEAK from my personal experience as a mother of four and a carer of a child with a disability.
This is a story of what happened to me less than eight years ago, and since I have started speaking about it more women have shared similar stories.
Life has no guarantees, and the death of a child leaves in its wake pain and anguish that no one should have to face. I lost my third child to a miscarriage in the first trimester of pregnancy and to say it hurt is not saying enough.
My husband and I had always wanted four or five children. As with many women of my generation, I didn't marry until I was 30 and so by the time of my last pregnancy I was in some statistically dangerous waters medically as a result of my age, 36.
By this time I knew the prenatal procedure fairly well and so I took my time in having my GP confirm my pregnancy. As a result, my dates were a little fuzzy and so he requested an ultrasound to confirm the age of the baby.
I attended this appointment alone. Everything seemed to be going normally until the sonographer started to double check measurements.
She asked my age. I asked what was wrong and she said the nuchal translucency measurement was very high. This is a measurement of a fold on the back of the neck.
I was told to go back and see my GP immediately with the scan results.
I was puzzled. She had shown me the screen. I had seen a heart, two arms and legs, a profile. It looked like my other scans. Why all the urgency? How could folds at the back of the neck spell disaster?
My GP told me the test results indicated the possibility of a chromosomal defect most likely to be Down syndrome.
The nuchal translucency measurement was used as an indicator of the condition.
Down syndrome is a common genetic condition, and its occurrence increases with the mother's age.
Some of the characteristics are physical, like slanting eyes, flatter profile, general floppiness of the muscles and hyper flexibility.
People with Down syndrome have some intellectual impairment, and difficulties with speech and understanding concepts.
They may also have health issues such as heart defects, thyroid problems, vision or hearing issues. All these can be treated with current medical and therapeutic practices. They can also occur in children who do not have a genetic condition.
I had read that amniocentesis was the only sure way to determine whether a baby had a chromosomal condition. However there is a risk of miscarriage following this procedure.
The doctors insert a needle into the womb and get a sample of amniotic fluid which contains some of the baby's cells. They then check the chromosomes and determine the results.
This procedure results in miscarriage in between one in 200 to one in 400 women.
The doctors do not consider this high risk. The fact that the baby tested could die whether it had any detected genetic condition or not was too much for me. I had lost one baby. I did not want to do anything to jeopardise another.
My GP referred me to a genetic counsellor at one of Sydney's major maternity hospitals.
My husband came with me for this consultation. He is an Orthodox Christian priest and dresses in traditional black cassock - a readily identifiable figure.
We were greeted by two doctors, Dr A and Dr X. They told us that I would be having an ultrasound, further measurements would be taken and possible action recommended.
They said the nuchal translucency measurement was significant, still too big. The most common outcome would be a baby with Down syndrome.
My husband and I held hands and waited. The doctors printed out the results. The nuchal translucency coupled with my maternal age of 36 gave me a one in 20 chance of having a child with Down syndrome.
They began to list all the possible consequences of this syndrome. My baby might have congenital heart disease; severe intellectual retardation, thyroid problems, Hershbungs syndrome, hydrocephaly.
He would have an extremely poor chance of survival after birth, if in fact, he did not die in utero. Their recommendation was for amniocentisis to prove the diagnosis one way or the other.
I asked if this wasn't a dangerous procedure. They told me it carried minimal risk, but it would give knowledge on which to act.
I hesitated. The terror of this entire test harming my baby shook me. The doctors said they'd give us a few moments of privacy.
My husband and I spoke about the possibility of a baby with a disability and the very real chance of this test causing a miscarriage. I could not bear to think of my baby dead. We both agreed to no amniocentesis.
The doctors came back and we told them that amniocentesis was not an option for us. I explained about my miscarriage and the accompanying grief and that it took nearly two years to conceive again.
Dr X looked at me and said the risk was minimal: didn't I want to know, so that I could choose?
Choose. Choose, what?
The statement hung in the air. We both said we didn't want to risk the pregnancy. Knowing wasn't worth it. Dr X shook her head.
I told them I was happy to do any non-invasive testing like ultrasounds if it would help us be prepared for the baby.
They referred us back to our GP to discuss the result and implications and they would see us again in one week for the next scan. I would be 14 weeks pregnant. There was not much time until the magic 20-week cut-off for abortions.
Our GP said the amniocentesis would only be useful if we decided to abort a foetus with a negative result. If we decided to continue the pregnancy all the necessary information could be obtained via ultrasound.
What the magic risk factor of one in 20 did do was give us an opportunity to rethink our attitudes towards disability. Did this make a person any less valuable, worthwhile or loveable? Did it define who this person was or their potential? Did we have the right to discriminate and judge?
Our parliaments legislate for anti-discrimination measures to be taken in the public arena, such as access ramps and beeping traffic lights so that people with physical impairments have greater access in our communities. It supports the mainstreaming of special-needs students in our schools but our baby's right to live was being questioned because he MIGHT have a disability.
Over the next 26 weeks I had seven ultasounds and visists with Dr X. I saw the head of paediatric cardiology, a paediatric gastroenterologist, and facio-cranial doctor.
Dr X offered me amniocentesis on another two occasions. The last one was at 30 weeks. The shocked look on my face said it all!
She said I wouldn't miscarry but would probably go into early labour. So, not only was I to have a baby with a possible disability but a premature one as well, thereby adding to the possibility of further complications.
"Choice" is a word that is constantly used in this arena. It is the catch cry of those supporting abortion.
It is often a very uninformed one-sided choice.
Where was my choice? The choice to keep my baby.
During this pregnancy it was constantly being questioned, disregarded and dismissed.
My decision to continue my pregnancy was not respected or supported.
The doctors' logic was baffling. The baby would either die in utero or soon after or I could choose termination and kill my baby before nature did. Either way my child would be dead, my heart shattered and my arms empty.
Only the means and timing would be different and the fact that I chose. Only one choice would guarantee my child's death - the choice to abort. Nature at least gave me a chance.
We chose a different maternity hospital to have our baby.
Our son Theofilos, Theo, was born after a one-and-a-half-hour labour in the birth centre on August 15, 2003, at 5.30am. After a chromosomal blood test it was confirmed that he has Down syndrome.
Not once throughout my pregnancy was I told about any support groups like the state's disability services, the Down syndrome association or the multitude of early-intervention programs like physiotherapy from six weeks old, speech and occupational therapy. I didn't even see a social worker until five days after Theo's birth.
Never was anything but a dismal and bleak future envisioned for my child.
His very humanity was ignored by doctors who constantly referred to him as the "foetus" or "it". This makes it easier to distance yourself.
Our son, Theo is a lively seven-year-old who loves dress-ups, Superman and riding his bike. He attends a mainstream school, loves show-and-tell, goes to birthday parties and on play dates.
The only one of the doctors' predictions that happened was that Theo has Down syndrome. But that is not why he is important and valuable.
He is a loved and cherished part of our family as are his brothers and sister. We would not be complete without them all.
He is valued because he is a unique human being. He has the right to live a dignified and meaningful life, to reach his potential and to be accepted for himself, the same as everyone of us.
The current genetic testing and counselling, result in 97 per cent of Down syndrome pregnancies ending in abortion. A recent survey in Toowoomba found no live Down syndrome births in more than a year which is statistically impossible.
Do we really want a world where no one has Down syndrome? We would lose so much to gain what? Who will be targeted next?
I would gladly do it all again to have my wonderful children and all that they have contributed to our lives and will continue to do in the future. I would make the same choice. I would choose life.
Choosing life: Maria Bozikis and her son Theo
Brisbane woman MARIA BOZIKIS was a guest speaker at the annual Rally for Life in the city on February 12. She spoke from the heart about her experience in the lead-up to giving birth to her son TheoI SPEAK from my personal experience as a mother of four and a carer of a child with a disability.
This is a story of what happened to me less than eight years ago, and since I have started speaking about it more women have shared similar stories.
Life has no guarantees, and the death of a child leaves in its wake pain and anguish that no one should have to face. I lost my third child to a miscarriage in the first trimester of pregnancy and to say it hurt is not saying enough.
My husband and I had always wanted four or five children. As with many women of my generation, I didn't marry until I was 30 and so by the time of my last pregnancy I was in some statistically dangerous waters medically as a result of my age, 36.
By this time I knew the prenatal procedure fairly well and so I took my time in having my GP confirm my pregnancy. As a result, my dates were a little fuzzy and so he requested an ultrasound to confirm the age of the baby.
I attended this appointment alone. Everything seemed to be going normally until the sonographer started to double check measurements.
She asked my age. I asked what was wrong and she said the nuchal translucency measurement was very high. This is a measurement of a fold on the back of the neck.
I was told to go back and see my GP immediately with the scan results.
I was puzzled. She had shown me the screen. I had seen a heart, two arms and legs, a profile. It looked like my other scans. Why all the urgency? How could folds at the back of the neck spell disaster?
My GP told me the test results indicated the possibility of a chromosomal defect most likely to be Down syndrome.
The nuchal translucency measurement was used as an indicator of the condition.
Down syndrome is a common genetic condition, and its occurrence increases with the mother's age.
Some of the characteristics are physical, like slanting eyes, flatter profile, general floppiness of the muscles and hyper flexibility.
People with Down syndrome have some intellectual impairment, and difficulties with speech and understanding concepts.
They may also have health issues such as heart defects, thyroid problems, vision or hearing issues. All these can be treated with current medical and therapeutic practices. They can also occur in children who do not have a genetic condition.
I had read that amniocentesis was the only sure way to determine whether a baby had a chromosomal condition. However there is a risk of miscarriage following this procedure.
The doctors insert a needle into the womb and get a sample of amniotic fluid which contains some of the baby's cells. They then check the chromosomes and determine the results.
This procedure results in miscarriage in between one in 200 to one in 400 women.
The doctors do not consider this high risk. The fact that the baby tested could die whether it had any detected genetic condition or not was too much for me. I had lost one baby. I did not want to do anything to jeopardise another.
My GP referred me to a genetic counsellor at one of Sydney's major maternity hospitals.
My husband came with me for this consultation. He is an Orthodox Christian priest and dresses in traditional black cassock - a readily identifiable figure.
We were greeted by two doctors, Dr A and Dr X. They told us that I would be having an ultrasound, further measurements would be taken and possible action recommended.
They said the nuchal translucency measurement was significant, still too big. The most common outcome would be a baby with Down syndrome.
My husband and I held hands and waited. The doctors printed out the results. The nuchal translucency coupled with my maternal age of 36 gave me a one in 20 chance of having a child with Down syndrome.
They began to list all the possible consequences of this syndrome. My baby might have congenital heart disease; severe intellectual retardation, thyroid problems, Hershbungs syndrome, hydrocephaly.
He would have an extremely poor chance of survival after birth, if in fact, he did not die in utero. Their recommendation was for amniocentisis to prove the diagnosis one way or the other.
I asked if this wasn't a dangerous procedure. They told me it carried minimal risk, but it would give knowledge on which to act.
I hesitated. The terror of this entire test harming my baby shook me. The doctors said they'd give us a few moments of privacy.
My husband and I spoke about the possibility of a baby with a disability and the very real chance of this test causing a miscarriage. I could not bear to think of my baby dead. We both agreed to no amniocentesis.
The doctors came back and we told them that amniocentesis was not an option for us. I explained about my miscarriage and the accompanying grief and that it took nearly two years to conceive again.
Dr X looked at me and said the risk was minimal: didn't I want to know, so that I could choose?
Choose. Choose, what?
The statement hung in the air. We both said we didn't want to risk the pregnancy. Knowing wasn't worth it. Dr X shook her head.
I told them I was happy to do any non-invasive testing like ultrasounds if it would help us be prepared for the baby.
They referred us back to our GP to discuss the result and implications and they would see us again in one week for the next scan. I would be 14 weeks pregnant. There was not much time until the magic 20-week cut-off for abortions.
Our GP said the amniocentesis would only be useful if we decided to abort a foetus with a negative result. If we decided to continue the pregnancy all the necessary information could be obtained via ultrasound.
What the magic risk factor of one in 20 did do was give us an opportunity to rethink our attitudes towards disability. Did this make a person any less valuable, worthwhile or loveable? Did it define who this person was or their potential? Did we have the right to discriminate and judge?
Our parliaments legislate for anti-discrimination measures to be taken in the public arena, such as access ramps and beeping traffic lights so that people with physical impairments have greater access in our communities. It supports the mainstreaming of special-needs students in our schools but our baby's right to live was being questioned because he MIGHT have a disability.
Over the next 26 weeks I had seven ultasounds and visists with Dr X. I saw the head of paediatric cardiology, a paediatric gastroenterologist, and facio-cranial doctor.
Dr X offered me amniocentesis on another two occasions. The last one was at 30 weeks. The shocked look on my face said it all!
She said I wouldn't miscarry but would probably go into early labour. So, not only was I to have a baby with a possible disability but a premature one as well, thereby adding to the possibility of further complications.
"Choice" is a word that is constantly used in this arena. It is the catch cry of those supporting abortion.
It is often a very uninformed one-sided choice.
Where was my choice? The choice to keep my baby.
During this pregnancy it was constantly being questioned, disregarded and dismissed.
My decision to continue my pregnancy was not respected or supported.
The doctors' logic was baffling. The baby would either die in utero or soon after or I could choose termination and kill my baby before nature did. Either way my child would be dead, my heart shattered and my arms empty.
Only the means and timing would be different and the fact that I chose. Only one choice would guarantee my child's death - the choice to abort. Nature at least gave me a chance.
We chose a different maternity hospital to have our baby.
Our son Theofilos, Theo, was born after a one-and-a-half-hour labour in the birth centre on August 15, 2003, at 5.30am. After a chromosomal blood test it was confirmed that he has Down syndrome.
Not once throughout my pregnancy was I told about any support groups like the state's disability services, the Down syndrome association or the multitude of early-intervention programs like physiotherapy from six weeks old, speech and occupational therapy. I didn't even see a social worker until five days after Theo's birth.
Never was anything but a dismal and bleak future envisioned for my child.
His very humanity was ignored by doctors who constantly referred to him as the "foetus" or "it". This makes it easier to distance yourself.
Our son, Theo is a lively seven-year-old who loves dress-ups, Superman and riding his bike. He attends a mainstream school, loves show-and-tell, goes to birthday parties and on play dates.
The only one of the doctors' predictions that happened was that Theo has Down syndrome. But that is not why he is important and valuable.
He is a loved and cherished part of our family as are his brothers and sister. We would not be complete without them all.
He is valued because he is a unique human being. He has the right to live a dignified and meaningful life, to reach his potential and to be accepted for himself, the same as everyone of us.
The current genetic testing and counselling, result in 97 per cent of Down syndrome pregnancies ending in abortion. A recent survey in Toowoomba found no live Down syndrome births in more than a year which is statistically impossible.
Do we really want a world where no one has Down syndrome? We would lose so much to gain what? Who will be targeted next?
I would gladly do it all again to have my wonderful children and all that they have contributed to our lives and will continue to do in the future. I would make the same choice. I would choose life.
1 comment:
Very thought provoking. It would appear we have a very one sided system here.
Thanks
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