Today I saw it through Facebook: http://www.npr.org/sections/health-shots/2016/04/26/475637228/only-human-a-birth-that-launched-the-search-for-a-down-syndrome-test
Recently there were a lot of discussions about NIPT test, which will be available on NHS for the prenatal screening for Down Syndrome and other trisomies. Little that I know that it all started from a mother who gave birth to a baby with Down Syndrome 50 years ago. 50 years is a long time. Back then, people didn't know that people with Down Syndrome could learn. People with DS did not have such a long life expectancy as now. They were expected to be institutionalized. She may succeeded in being part of the development of a screening test but the need for such screening test has changed. If children with Down Syndrome can look forward to a long, happy and semi-independent life, and most of their medical problems can be treated, why do we still want a screening test prenatally?
I suppose some parents want to know and with all the right information still feel they cannot commit to have the baby and opt for abortion. Some may want to prepare for the birth. However, we shouldn't be encouraging people to opt for abortion nor should we assume that abortion is the default option.
Thursday, 28 April 2016
Pro-life vs Pro-choice
I believe in God and I am a Christian. When it comes to abortion, I will not choose to abort. Am I pro-life? I suppose I am in this sense. However, I know that sometimes under some circumstances, people may want to choose abortion. Am I against it? No, I am not. You may think that it is a non-Christian thing to say but God actually has never forced people to do things or not to do things. He lays out rules, tells us what he likes and what he doesn't like, and the consequences. However, He has never forced us to choose one way or the other. Out of love, He gives us free will. Now I am not saying that God is pleased with people when they choose abortion. Far from it, I am sure God grieves for the unborn baby and for the expectant mother. God knows the weaknesses of humans though, therefore, He will continue to love and to change the person.
So while I will still say, abortion is undesirable or wrong. It is the individual's right to choose what to do and one has to accept the consequences of her own action. I will not be judging women on this. However, when it comes to abortion for foetal 'abnormalities', does she have all the information needed to make an informed choice? Are the information correct and accurate? Can she process the information correctly? Another thing is that when we allow abortion in our law, is the law reasonable when it comes to balancing the right of the woman and the right of the baby?
Even with the correct information, some women will still choose to abort because of personal circumstances. I don't think they should be demonised. It is a difficult decision. We should sympathise with them. That is the pro-choice side of me.
So while I will still say, abortion is undesirable or wrong. It is the individual's right to choose what to do and one has to accept the consequences of her own action. I will not be judging women on this. However, when it comes to abortion for foetal 'abnormalities', does she have all the information needed to make an informed choice? Are the information correct and accurate? Can she process the information correctly? Another thing is that when we allow abortion in our law, is the law reasonable when it comes to balancing the right of the woman and the right of the baby?
Even with the correct information, some women will still choose to abort because of personal circumstances. I don't think they should be demonised. It is a difficult decision. We should sympathise with them. That is the pro-choice side of me.
Did I really know Down Syndrome?
In medical school, we were told about Down Syndrome (DS) as a disorder. Babies born with it have a high chance of having congenital heart disease, tracheal oesophageal fistula, Hirshsprung disease, etc. They will live up to 60 years old now but they will have learning difficulties. Growing up, I have never known anyone with DS personally. So what will I do if I have a child with DS? Before we had Sean, I felt that no matter what disability my child has, I have to love him and bring him up to fulfill his potential. As for DS, my idea of potential was being able to walk and talk, being able to work somewhat in a sheltered workshop because that was what I knew about people with DS then. After having Sean, my expectation has gradually changed. Now I want to help him to learn, to be included in the society, have a job and live independently in the future.
It is difficult if we have never met or known someone with DS to picture this. The education that we received in medical school and the clinical experience that we have through working in the hospital or surgery give us only a glimpse of what DS is or more appropriately who people with DS are. We tend to think of it as a collection of medical problems. We see it as undesirable, abnormal. This is why I was so upset when I knew of the diagnosis because I felt sorry for Sean. I thought that he had this horrible syndrome that he will never be able to live normally.
The reality is that people with DS are individuals capable of learning, interacting, socialising, working, just like other people. They may learn a bit slower but they will learn. To me, Sean is a funny and cheeky boy. He is inquisitive, creative and eager to help. Our days are pretty normal, filled with the mundane routines. They go to school and we work. They play with each other and fight with each other. You hear Hannah getting upset about Sean making a mess of her things and Sean complain about Hannah. If you ask me now what I think about having a child with DS. I will say it is not only ok but more than that. It is awesome. Our days so far have been filled with joy.
We meet families who are equally happy about their children with DS. In fact, most of the despairs come not from the child but from the society, from the society's attitudes towards disability. If that can be changed, it will be even better. It is changing and it is nice to know so many families are eager to adopt children with DS. It is nice to know more and more women choose to keep their babies when they found out the diagnosis during prenatal screening.
It is difficult if we have never met or known someone with DS to picture this. The education that we received in medical school and the clinical experience that we have through working in the hospital or surgery give us only a glimpse of what DS is or more appropriately who people with DS are. We tend to think of it as a collection of medical problems. We see it as undesirable, abnormal. This is why I was so upset when I knew of the diagnosis because I felt sorry for Sean. I thought that he had this horrible syndrome that he will never be able to live normally.
The reality is that people with DS are individuals capable of learning, interacting, socialising, working, just like other people. They may learn a bit slower but they will learn. To me, Sean is a funny and cheeky boy. He is inquisitive, creative and eager to help. Our days are pretty normal, filled with the mundane routines. They go to school and we work. They play with each other and fight with each other. You hear Hannah getting upset about Sean making a mess of her things and Sean complain about Hannah. If you ask me now what I think about having a child with DS. I will say it is not only ok but more than that. It is awesome. Our days so far have been filled with joy.
We meet families who are equally happy about their children with DS. In fact, most of the despairs come not from the child but from the society, from the society's attitudes towards disability. If that can be changed, it will be even better. It is changing and it is nice to know so many families are eager to adopt children with DS. It is nice to know more and more women choose to keep their babies when they found out the diagnosis during prenatal screening.
Unexpected News
I went to see Sean the next day after the Caesarean. He was in a little cot, sleeping, very peaceful. I looked at him intensely and thought it looked like that he has Down Syndrome but I couldn't be 100% certain. Simon came in the afternoon. As we were both in the NNU, the consultant came and said that she needed to talk to us. So we were led to a private room and she told us that they thought he had Down Syndrome. I just wanted to cry. She said to me, ' What do you think about it?'. I told her as parents we will still bring him up and let him fulfil his potentials. She said it is right and actually people with Down Syndrome can live independent lives with help now. She left us alone for a while and we took that time to cry and reflect. Then she told us about the investigations that were necessary such as ultrasound of heart, blood tests, etc. This is the start of our journey of discoveries.
My pregnancy
I was in my 30s when I had my first boyfriend and we married when I was 37. I became pregnant a few months on. Of course, I knew about 'risk' of Down Syndrome at that age and I thought I knew what it was (Trisomy 21, right?) and what will be the problems (50% chance congenital heart defects, etc). I did not go for screening as I knew I will not opt for termination anyway. So after 10 months, Hannah was born, no Down Syndrome.
When I found out that I was pregnant in 2008 Christmas, I just opted out of screening as before. It was a little bit complicated but generally uneventful until I was 35 weeks when the midwife was a bit worried as my fundal height (the size of my bump) wasn't growing. She referred me to the hospital where they found that there wasn't much water around. So they monitored for a couple of weeks and one day they found that the oxygen level in the umbilical cord was low so I went for Caesarean section and Sean was born. In many ways, it was like a pretty normal 'urgent' Caesarean section. I had a spinal and my husband Simon was there by my side. The baby was delivered. I heard him crying and screaming. Everyone congratulated me, saying how much he looked like me.
We went back to the ward, elated. I felt that he was a bit floppy but I put it down to him being born three weeks early. He had some problems maintaining his sugar level and temperature so he was taken to the neonatal unit. I had to expressed milk for him and the next morning I was mobile enough to see him.
When I found out that I was pregnant in 2008 Christmas, I just opted out of screening as before. It was a little bit complicated but generally uneventful until I was 35 weeks when the midwife was a bit worried as my fundal height (the size of my bump) wasn't growing. She referred me to the hospital where they found that there wasn't much water around. So they monitored for a couple of weeks and one day they found that the oxygen level in the umbilical cord was low so I went for Caesarean section and Sean was born. In many ways, it was like a pretty normal 'urgent' Caesarean section. I had a spinal and my husband Simon was there by my side. The baby was delivered. I heard him crying and screaming. Everyone congratulated me, saying how much he looked like me.
We went back to the ward, elated. I felt that he was a bit floppy but I put it down to him being born three weeks early. He had some problems maintaining his sugar level and temperature so he was taken to the neonatal unit. I had to expressed milk for him and the next morning I was mobile enough to see him.
About
I always like maths and engineering. However, when the time came for me to choose what to do in the university, I decided to take up medicine as 'I want to help patients'. I found out in a couple of years that I didn't really like medicine but I finished the degree anyway and became a doctor. While I was a trainee anaesthetist in Truro, I went to a flea market one day and found a book of partial differential equations. I bought it and went home to read. Then I said to myself, 'Hey, I can still do these maths'. I looked at some courses that universities offered and found 'MSc in Medical Physics and Clinical Engineering' at University of Sheffield. And they accepted candidates who are from biological disciplines but they need to achieve at least degree level of engineering maths. So I spoke to the course director and lecturers. They suggested me to go through the undergraduate engineering maths textbook, which I did in a month. I enrolled in the course and that was the start of my career change. After the MSc, I went on to do a PhD in Automatic Control and Systems Engineering and did research in universities for over 15 years and now I am developing an Android app for people with disabilities.
The reason for this blog is that after going through medical training, I thought that I knew quite enough about different common conditions to go through life but how wrong I am. I hope to discuss these issues from the perspective of someone who has worked in the clinical environment but also has come out of it and due to having a child with Down Syndrome, has met a lot of people with all sorts of disabilities.
The reason for this blog is that after going through medical training, I thought that I knew quite enough about different common conditions to go through life but how wrong I am. I hope to discuss these issues from the perspective of someone who has worked in the clinical environment but also has come out of it and due to having a child with Down Syndrome, has met a lot of people with all sorts of disabilities.
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