One of the reasons behind legalizing abortion was the anguish of parents having disabled children.
Ironically, the ability to prevent many cases of retardation via vaccines (e.g. against Rubella, a common cause of profound retardation in the past), treatment (congenital syphillis), or surgery (meningomyelocoel and hydrocephalus) has improved over the last 40 years.
Other diseases that in the past were thought to be incompatible with a full life, such as cystic fibrosis or polycystic kidneys, no longer result in childhood death.
But one of the common screening tests is the one for Down’s Syndrome, a common cause of retardation that in the past was “treated” with the children being placed in institutions.
But things are changing, and thanks to the Kennedy family’s involvement in the cause of the retarded, these children now usually live at home, get special education, and are accepted as part of the community.
As a result of society’s change in attitude toward these children, one result is that more parents are refusing advice to abort these children, and are choosing to raise these children. The reasons are surprising.
From the BBC:
A fifth said they had known somebody with Down’s, a third cited religious or anti-abortion beliefs and 30% felt life had improved for people with Down’s….
Most respondents said they felt supported by their family and friends and considered that the future was far better today for those with Down’s syndrome.
They pointed to integrated education in particular and a greater acceptance of what it means to be different.
One respondent said: “I don’t subscribe to the notion of the ‘perfect human being’ and found the idea of selecting one child in preference to another abhorrent.”
The opinions are in contrast to much of the critical sniping against Sarah Palin by some partisan blogs. The refusal of the Palins to abort their child with Down’s syndrome was used to snipe at her as a religious nut, yet the UK study suggests the decision to carry the child with Down’s syndrome to term has more to do with an acceptance of the handicapped child as a person who is valuable and can be loved.
Down’s syndrome has come a long way in the last fifty years. When I was in medical school, such children were placed in institutions at birth. As late as 1982, doctors persuaded parents not to repair an espophageal blockage on a child with Down’s syndrome, resulting in the child dying a terrible death. The doctor involved dismissed criticism, emphasizing that the child would essentially never be able to talk, walk, or care for himself (none of which is true).
Medical textbooks in the 1950’s said these children rarely lived beyond 12 years, probably because they were prone to certain infectious diseases. However, with the availability of antibiotics, these children usually live into their fifties.
Medially, things have changed.
Usually these children are well cared for at home, and then attend special education classes in local schools. The “average” IQ is low normal to mildly retarded, and some can attend normal schools.
Other medical advances include the ability to treat the children with heart problems or with intestinal blockages.
These children often are “hypotonic”, that is they are floppy, and less strong in moving. But this is now treated with physical therapy. The large tongue in many of these children makes feeding slow, drooling more common, and difficulty in speech. So the children and parents are taught to communicate with simple sign language, and in severe cases, surgery to decrease the size of the tongue can be done. In Europe, some parents actually do plastic surgery on the face so that the children are better accepted into society; in the US, however, such surgery is rare.
The children are prone to other medical problems as they grow. About ten percent are prone to instability of the neck; some have hyperactivity or other behavioral problems, but most are friendly and outgoing and have good “people skills”.
People with Down’s syndrome have some immune problems, so infectious disease (especially ear infections) are common. They have a higher rate of some forms of Leukemia. And the children must be monitored for thyroid problems.
As we see more and more people with Down’s syndrome age, it has been discovered that they develop typical Alzheimer’s disease in their 40’s or 50’s.
However, with modern antibiotics, the quality of life for people with Down’s syndrome is good. Usually they can hold simple jobs, and can live with minimal supervision.
The discussion at the end of the Scotsman (newspaper) report on the story is telling: Some call these children names and complain that parents are selfish to make society pay the bills for such people.
But the best explanation of why all life is valuable is expressed by Pearl Buck, American writer, Nobel Prize winner and humanitarian:
The idea that the disabled have much to offer others is undoubtedly true and often movingly expressed.
Pearl Buck, who had a mentally impaired daughter, wrote that “without her I would not have had the means of learning how to accept the inevitable sorrow, and how to make that acceptance useful to others. . . . A retarded child, a handicapped person, brings its own gift to life, even to the life of normal human beings. That gift is comprehended in the lessons of patience, understanding, and mercy, lessons which we all need to receive and to practice with one another.â€
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Nancy Reyes is a retired physician living in the rural Philippines. Her website is Finest Kind Clinic and Fishmarket, and she writes medical essays at HeyDocXangaBlog
6 users commented in " More UK Parents chose to have their children with Down’s syndrome "
Follow-up comment rss or Leave a TrackbackI don’t know whether I would have had the patience to cope with the difficulties of raising a child with Down Syndrome, but I know fairly well several people who’ve had such children and each says the child was a blessing to them and the rest of their family. It seems that the changes in them that are necessary to raise that child is close to transcendent and reached into all aspects of their lives. Bless them.
How about people who choose not want to give birth to a downs syndrome child?
My brother is a 47 year old with Down Syndrome. Our mother died when he was three years old and our father died when he was four. He lived with one of my sisters for years and then decided ten years ago to come live with me.
I have never been one to judge whether someone should have an abortion or not. That is between them and their God. My mother chose not to have and abortion. That was her choice. My brother has always lived with one of his siblings. We were very fortunate that he didn’t need to be placed anywhere else. He had always been an upstanding member of his community with lots of friends.
At the age of 45, he developed Alzheimer’s disease. All his life, he struggled learning so many things that we all take for granted. When this disease took over his life, he lost so much, especially his ability to take care of his physical needs. I did my best to take care of him for one year but he started to require 24 hour care which I couldn’t do.
One year ago I had to make the most difficult decision of my life. I had to place my brother in a nursing home. To say he didn’t want to go would be an understatement. I will never forget the night I had to leave him there. I will always remember seeing him crying and begging me to take him hom. I would never want to see anyone go through that. That was the worst day of my life. Each time I go to visit him he asks when I am going to take him home and I relive that night all over again.
In the past, I have always applauded couples who have agreed to keep a child with a disability. But, now I ask you, if something was to happen to either you or your partner, who would be the one to have to take care of this child? These children live to be 50 or 60 years old. Just think of how old you will be then. Doctor’s are now finding that women who have a child with DS also develop this disease. So, a husband is left to look after both his wife and child, both of them with Alzheimer’s.
A lot of couples have more than one child and expect that the healthy child would, of course, assume the responsibility. They think that since the sibling loves this child as much as they do that they would be more than happy to assume the responsibility. That is the worst thing you could possibly do to another child.
Of course, your healthy child, at a younger age would agree to take on the responsibility. What child wouldn’t. My siblings and I knew from the day our brother was born that he was special and required special needs and we were taught to assume some of the responsibility.
When my brother was born, there were no computers to check out what happens to a child with DS as they get older. I am aware that not all DS children develop Alzheimer’s but of all the DS children I have met over the years, most of them have developed the disease.
I wish I was as financially well off as the Kennedy’s so I could hire a private nurse to take care of my brother but unfortunately, I am not.I read how Sara Palin was criticized for her choice in keeping her child. Anytime I saw Sara Palen and her family on TV, she wasn’t the one holding the child, it was one of the child’s siblings.
My heart always went out to any of my friends who had to place their parent(s) in a nursing home. I could see the pain they were going through. But, to have to put a sibling, who is both emotionally and physically still a child, in a nursing home is the most painful thing I have ever been through. There are times I wished that he had been placed in an institution in the first place so he would have gotten used to it. Instead, we got to have him with us for so many years. With this rotten disease, we got to watch him lose all the things he struggled so hard to learn. But, the most important thing he lost was his home.
So, I ask you, if you decide to have a child with a disability, if something was to happen to you, who will assume the responsibility for that child? Please don’t assume that your other children will, that is so unfair. Please don’t expect them to do so. You are the ones maing the choice to that that child, not your other children. Your other children have a right to their lives as well. You may expect that they should be grateful that they were not born with a disability and should be happen to help with the disabled child. You other children did not decide to have this child, you did. It is your responsbility to take care of him/her, not your other children’s.
I am not advocating abortion. I was raised in a Catholic home. My mother did not use birth control and had 13 children. Consequently, she lost her life at the very young age of 42. I am the 6th oldest and do know, first hand, what it is like to take on the responsibility of siblings. I took that responsibility very seriously, as I was taught to do.
So, I do not agree with anyone, whether you have a healthy child or a child with a disability, assuming that other siblings will take care of YOUR children. My mother died. She didn’t have any choice in the matter. I think it is so important for you couples who decide to have a child with a disability to make sure that you and you alone know that you are responsible for this child and this child’s future, nobody else is.
It surely is a pain to have a child with any kind of disease when you know that the kid you have given birth to, can die any moment or would be unable to live a normal life as others..but now when the medical science has made so many advanced improvements, abortion isn’t the only solution…
But for the couples who have had the such experience as Down Syndrome can go through Embryo Screening (PGD) to make sure that the feotus isn’t suffering from any kind of problems. Medical Centers like Superior A.R.T. are offering latest advanced technology in this regard…parents who want to have a baby free of disease can take advantage of PGD, an assisted reproductive technology. Preimplantation Genetic Diagnosis (PGD) (also known as Embryo Screening) is a form of genetic diagnosis performed prior to implantation. It is a reasonable choice for couples at risk of transmitting hereditary genetic diseases to their children. PGD allows scientists to choose unaffected embryos and transfer them to a woman undergoing in vitro fertilization (IVF).
PGD is very powerful and can be beneficial to many couples. It can be applies in many different circumstances to serve the needs of individual couples that are at risk of conceiving genetically abnormal children. Superior A.R.T., one of the leading providers of PGD in Southeast Asia, offers comprehensive PDG option to interested couples.
Superior A.R.T. also offers PGD to couples who have identifiable genetic disorders, including thalassemia, breast cancer and many more. We believe that it would be less upsetting to discard an abnormal embryo before implantation, rather than go through early pregnancy and make the difficult decision whether to continue with an abnormal pregnancy or abort it. In those couples with a complete analysis of their genetic defects, Superior A.R.T. can test for such abnormalities in their embryos in order to prevent those undesirable genetic abnormalities. A search among family members for a bone marrow donor that can provide HLA matching stem cells may enable you to use PGD to bring a child into the world…..
PGD is also used to screen for genetic chromosomal abnormalities due to advanced maternal age. These disorder are more likely to occur in women 35 years if age and older and lead to problems such as Down’s syndrome or early miscarriage. The chance of these chromosomal problems increases with maternal age, regardless of family history.
PGD requires biopsy (removal) if cells from each embryo for analysis. Just like couples with infertility problems, you will need to have IVF cycle to create a number of embryos. Although many IVF centres offer PGD services, it is best to use a centre that has experience with PGD in order to achieve the best results. This is because embryo biopsy is highly skilled procedure. Recent studies show that biopsy skill has a big impact on embryo survival.
children with down syndrome are not different from people who can function normally. they should be given the equal opportunities of having a normal life like we do by loving and appreciating them for who they are and not what they might have been.
Having a child with done syndrome may prove to be more challenging but we must understand that it is a life and that miracles do happen. Please visit my website for more information on how to raise strong healthy children in today’s ever changing society.
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