How pre-birth testing has affected my life, or the life of someone close to me

The long dark night

I was recently tested for Down Syndrome via the nucal fold measurement test. The scanographer did not say much, but I knew enough of the measurement theory to know that our figures were not good ones. Shortly after, while I was at the supermarket, a specialist called me. Would I have an amniocetesis? The risk of DS was 1 in 100 - one percent. A low risk reading would be in several thousand. Suddenly we were faced with the issue of having at least one child born with a genetic disorder. I say at least one - because I was having twins. I knew that one twin would be at higher risk then the other, so assuming I had the bad news first, I enquired about the low risk twin. No, that was at even higher risk - 1 in 80. "Yes, go ahead, book us in" was my automatic response.

By the time the day was over, we knew we would not be having the amnio. The risk of miscarrying the twins was between 0.5 and 2% - about the same as the risk of the DS. What if we miscarried due to the procedure and lost the children? It had taken us six years to get pregnant - so our overriding concern was the safety of the children.Why did it matter if they had DS or not? We strongly felt that we had not contracted to have perfect children - but that we had made a life choice to be parents. Whether we felt like that because PGD isn't currently available or whether we would have felt like that if PGD was regularly used - we don't know. But we knew regardless of the result of the amnio, the pregnancy and the babies would stay. So why have it? We decided to enjoy the pregnancy for what it was, and not for what the outcome might be.

my experience of pre-natal testing

I accidentally had pre-natal testing in the UK while pregnant with my now 13 yr old son with Down Syndrome (DS) and my 10 year old "normal" daughter. The "triple test " was done routinely with my DS boy and being a kiwi I had no idea what it all meant. The expectation was that we would terminate if the baby had DS , we had no info re DS given to us and when we decided to carry on with the pregnancy we were given no support (but would have had loads if we had terminated). I experienced eugenic-like effects when he was born, e.g. no children under 5 at the local DS support group, no DS babies at the hospital group, learning that there was 100% detection of DS foetuses in my area that year and only my son was born. Felt very isolated being the only one with a pre-natally detectable disabled baby (which turned to anger that my son wasn't good enough for such a shallow society; such terrible prejudice in a so-called civilised society). When pregnant with my daughter they wanted to do experimental tests on me such as 3-d face scans for DS-like features; I felt I was ill, not pregnant. Said "no" to it all and returned to NZ. People need to know that it was shattering having this DS baby but it passed; we love him and wouldn't be without him. He has every right to be here and while his life is more difficult in some ways-he's still having a great time. Every time we hear that a baby with DS has been terminated we feel sorry for the people (and the baby of course) because they don't know what they have missed out on and I mean positive things-and this is not said out of trying to make ourselves feel better-it is genuine and a discovrey for me personlly I guess becasue before I had my DS son i was just as fearful and prejudiced as anyone else-but we knew deep down while pregnant with him that he had a right to be born and as my husband said-"you can't knock someone off just becaude they're not the full quid"!! Never a truer saying. (Luckily i agreed-i can imagine there are loads of couples that face terrible stress over this issue). So I am very sorry to see routine screening arriving in NZ.

The Unborn Child

The Unborn Child

You who would save the zeal,
Whales, penguins, sharks and seals.

You who protect our environment,
Our air, land, rivers and monuments.

Had you thought of me an unborn child?

You who ardently save and recycle garbage,
and protest loudly at man's carnage.

You who would give your all,
To chase and worship the ball.

Had you thought of me an unborn child?

You who are searching for staff to employ,
But as yet have found no joy.

You who vouch for higher qualifications,
Yet sadly witness dwindling school populations.

Had you thought of me an unborn child?

You who call the miracle of life a fetus,
And ignore our cry "Please don't delete us".

You who wear the wig and gown,
Making judgments so diverse and profound.

Had you thought of me an unborn child?

You who walk the corridors of power,
Seeking justice hour by hour.

You who can see the light of day,
And be a voice for the innocent to save.

Had you thought of me an unborn child?

You who were designed,
By the Creator divine.

Who gave His Son Jesus,
Born of Mary to redeem us.

Had you thought of me an unborn child?

You who had a mother dear,
Who once for you did bear.

For you were once that hidden form,
Of a growing child unborn.

I have an intellectual disability : I'm not a Freak/Mistake/2nd Class anything

As it happens, I was born with a 'less severe' intellectual disability, two of my siblings also. And I brought with me several comorbid physical complications and deformities. (Oftentimes we three must have seemed more alien than the Hollywood aliens).

Yet I know very much I grew-up loved. I was never called a freak, or a mistake, or a second class human, someone who really should've been 'eased from existence' before I could befoul the lives and dreams of my parents and complicate the space and finance of others. I was just me, and - in my innocence - I was happy.

When I got to my twenties, I read about amniocentesis, chorionic villi-sampling and alpha-fetoprotein testing. And I was fine with all that, because doctors and parents might need to know what special tips, treatments and TLC to employ before or after the birth of a certain child. (Afterall, the great Kiwi Professor Sir William Lilley, Father of Foetology, was rapidly opening-up the possibility of operating - as he put it so lovingly - *en ventra sa mere*).

Then I read about the *real* purpose behind the push for such testing. And it dawned on me it had serious implications for my life - I was a 'freak' i.e. someone who survived only through an early inability to technologically identify and eliminate me. I was a 'mistake' who missed out on a latter-day 'search and destroy' mission, like those twins in the Auschwitz study where happenstance meant one survived 'selection' and the other not.

No longer a full citizen of society, but a second class survivor. No longer vested with a right to my life - just lucky to be left alive.

I was devastated. Still am.

To anyone who would have done me to death, I do not wish the same upon you, but while things remain the same between you and I, don't ask me to agree with you, to trust you, to let you have it all your way.

"Never Again". Yeah, right.

That's how pre-birth testing has affected (devastated) my life. How about yours?

Long journey

I found out I was pregnant for the first time on 14 February 2003.

I had my nuchal translucency test at around 12 weeks with a 1:2000 chance of Down's Syndrome. At my anatomy scan, I was told that I was having a boy, and that he had some soft markers for Down's Syndrome. I underwent an amniocentisis, and the cells went to the lab for analysis. In New Zealand, an amnio sample is only checked for gross abnormalities - missing or extra chromosomes - unless there is a specific reason to analyse the sample in deeper detail. In our case, our son did not have any extra or missing chromosomes.

My son had a number of health issues when he was born via emergency C-section. Six and a half weeks later he was still in the Neonatal Unit, and we finally had an answer - he had an inherited terminal deletion of the X chromosome, and he inherited it from me. We took him home, but the doctors could tell us nothing of what to expect, as there are only about half a dozen documented cases worldwide. He died at the age of five months and five days on 29 March 2004 due to complications from his genetic condition.

I have a 25% chance of conceiving an affected male with every pregnancy. An affected male may not survive birth; he will be born with a range of health issues similar to those my son had; he will have pain; he will die very young.

In December 2004 I got pregnant naturally again. I went in for a CVS on 1 March. On 3 March we found out we were having a healthy boy. On 18 March I miscarried due to complications from the procedure.

e found out that even with IVF and Pre-implantation Genetic Diagnosis, we had only a 20% chance of taking home a live baby, not due to our health (excellent on both sides) but because embryos cannot be grown past 8 cells before implantation. At the 8-cell stage, doctors can't tell if the cells they remove for testing are stem cells, placenta, or the baby. Growing the embryo to the 128-cell stage would mean that the genetic testing would be as simple as the testing done for a CVS - and means a far lesser risk to the embryo and subsequent pregnancy.

We rolled the dice and tried again. I got pregnant in November 2005. I went in for an amniocentesis in March, choosing the less risky diagnostic procedure. And thankfully, on 17 August 2006, I gave birth to a healthy, LIVING baby girl. She is the light of my life, as all SPALS babies are to their parents.

Imagine

Pre-birth testing raises many ethical challenges, and everyone has an opinion based on their own personal experience. Someone who was born with a genetic condition and raised in a loving family will argue vehemently against pre-birth testing. Someone who was born with the same level of disability but was not raised in a loving family - was in fact mistreated and abused - will wish that pre-birth testing had been available before he/she was born.

For others, we have carried a pregnancy to term, loved that growing life with everything we had, then found out after that baby was born that something was seriously wrong. We have watched a much loved son or daughter struggle with the most basic components of life - breathing, eating, living without pain - watched our son or daughter have countless needles and medical tests - learned CPR knowing full well that one day the life of our son or daughter will depend on us knowing it and responding in time. We watch our baby struggle, not knowing if he or she will survive the first year. And when that child dies, we grieve. We grieve deeply, every day, and we miss that child every day for the rest of our lives.

Imagine you are the parent of a child who has inherited a lethal genetic condition. Imagine the fear we feel going into a subsequent pregnancy, knowing that we have a 25% - or even 50% - chance of conceiving a baby with the same genetic illness, and with the same outcome. Imagine living with that fear for 40 long, terrifying weeks if there is no diagnostic tool. Imagine trying to fight for your baby's life, knowing the second time that child will die.

Now imagine there exists the medical technology to know for a fact whether or not that subsequent baby carries the genetic condition that will kill him or her, and that you could find out before the first trimester of your pregnancy is finished. Imagine that you could spare a child that pain.

here are many lethal genetic conditions that cannot be diagnosed using the current technology. But for those that can be diagnosed, the technology should be made available to the parents. Parents have the right to decide whether or not to continue with a pregnancy if the diagnosis is lethal or will seriously impair quality of life. It is not the job of the government to take away the right of choice.

Impossible decision

My husband and I had the impossible choice to make 5 yrs ago when an amnio diagnosed Down Syndrome (I was 36). Some of you reading this will have been in a similar situation but most wouldn't have. My son was moving inside of me...I was in no place mentally to make this decision but I had too, and fast, as time was running out. We were told that almost all people carrying Downs babies terminate. I was scared, this baby was unplanned and we had 3 other children (my IUD had moved). I was not in a good place and our marriage was not as strong as it could be. So much to think about. If it was just me and my baby I knew I could do it...but I had so much else to consider. We terminated. It has taken this long to stop constantly rehashing scenarios in my mind. We are in a better place now emotionally but it has taken this long with over a year of support grp meetings. I miss my 4th son and think of him alot. I still don't know what would have been the "right" decision. Maybe living with the guilt of this is worse than the alternative, but I will never know.

I thought I was pro-choice until I had to make the choice

My age, nuchal scan and quadruple blood test resulted in my baby being given a 1 in 3 chance of chromosomal abnormalities. I told my inlaws about the results of the tests so that they were aware how our pregnancy was progressing. I figured that this is their grandchild so they'd be interested in what was happening. As a result I endured weeks of daily phone calls demanding that I have an amnio as soon as possible as I would have to terminate the baby if it was not 'perfect'.

I'd always considered I was pro choice and I guess in a theoretical sense I still am to some degree but when we were talking about my child I now found I felt differently and would not contemplate killing my child simply because he was not going to be my inlaws definition of a 'perfect' grandchild.

I don't think discussing this prior to becoming pregnant would have helped as I didn't really know how I really felt about this until it was me making the decision. Until that point it would have just been a theoretical discussion about a child that did not yet exist. Once it was a real child - my child - I found out how I really felt.

Scan to the max

After the shock & grief of a late miscarriage. I was keen to find out as much as i could about the next baby as soon as i could.

After an awful pregnancy & several threatened miscarriages we were flown to Auckland, I had toxaemia. Our little girl weighed 668g. There followed years of sleep depravation stress, struggle, fear & medical intervention to help her grow & gain weight. This is ongoing.

After more miscarriages I had 2 more children. The 2nd pregnancy, medicated throughout was horrific & heavily monitored. At the same time a pregnant friend was refusing all medical intervention including routine scans. Talk about chalk & cheese.

After constant threatened miscarriages I had a healthy full term daughter. My friend had a healthy full term son.

Because I have a heart condition my daughter was scanned in utero & out in case I passed it on. The tests were negative. Months later our GP discovered a heart murmur. I had passed my condition on to her.

I was already on the list for heart surgery, now she is too.

Although told not to have more children & my husband agreeing to a vasectomy, which he kept putting off, I became pregnant again & at my husbands begging, went on to have a highly monitored slightly less medicated (i controlled it myself this time) happy healthy pregnancy. (until my husband suddenly left at 6mnths). I had a son who is heart defect free.

Now at 11, 4 & 2 my children are my treasures. I've had heart surgery, my daughter will have hers soon. I've had tests & medicated pregnancies, lost babies, had a very sick little girl & been part of her struggle. I will continue to be there for my kids through all their pain & joy. I love & delight in them more thanI can put into words. Their journey is also mine & having kids, getting pregnant for the first time begins a journey for which there is no map. I sympathise with those who have to make agonising choices. I understand somewhat the toll & stress in having a seriously sick or disabled child. What is right for one is not necessarily so for another, all situations are unique. Even in similar circumstances, individuals ability to cope differs also.

Having children is a huge responsibility financial, physical & emotional for the rest of your life. My thoughts go out to those who are at whatever stage on this journey & also to those who help/care for, guide & govern us.

Thanks for the opportunity to be part of this

truly informed choice

I imagine there is an extremely common "misconception" around the idea that giving birth to a foetus with an abnormality is all negative but I'd just like to advertise the fact that this is a misguided belief and simply is not true. Three is another side to the story.

I have a number of friends who have had to face the terrible news that the babies they were pregnant with were "abnormal with a life expectancy of about a month". These couples managed to resist pressure to terminate and their severely "abnormal" babies were born. The reasoning behind their decisions to carry on with the pregnancies? They felt that their babies were human beings. Much loved members of their families. To have aborted these "abnormal" fetuses would, to them, have been analogous to having their appendix taken out. As it was, these babies were loved unconditionally by their families, all-be-it for the short time they were with them. Unimaginably difficult and heart-wrenching times for these families, of course, but these babies experienced love, warmth and respect. This is not child abuse. This is caring for people in need, similar to the care we give, for example, those who are terminally ill, those who have dementia and other perceived negative conditions. Providing care and respect to the least "valued" in our societies is the greatest indication of civilisation; of being human. It is part of our human ethics to behave responsibly to those in greatest need.

I have some insight into this as the mother of a child with Down syndrome. I knew I was at high risk of having an intellectually disabled child while pregnant with him and faced all sorts of fear due to my ignorance about Down syndrome. Fortunately my husband and I decided to continue with the pregnancy, and I say fortunately because without my son I would've been prejudiced to a certain degree against disbility all my life; worse I would have missed out on experiencing the incredible love I have for my son, the love and trust he returns to us all, the joy at his achievements, the laughter he brings to may people, his intuition and sensitivity, his lack of judgement of other people, the strength he brought to our marriage and the caring and accepting siblings he has. The list goes on re the unique positive attributes my son and others like him bring to our lives and this needs to be made known so people can make a truly informed decision.

A Miracle in the Making

On the 27th of November 2000 our second baby, a son, was born. At one month old he was diagnosed with the ultimately terminal condition, cystic fibrosis. The grief was life consuming and overwhelming. My husband and I both had to be carriers of this condition to pass the gene to our baby. we had a one in four chance of any further children having the disease. To completely avoid the pain of another child being diagnosed with CF, I decided in 2002 to have a tubal ligation (tubes tied). This happened in 2003. In October 2004 I realised that the nausea I was feeling wasn't going away and, in complete denial, took a pregnancy test. The test was positive, the tubal ligation had failed. After the pregnancy was confirmed not to be an ectopic pregnancy, I was referred to a Genetic Counsellor in Auckland. We were given the option of a CVS (pre birth testing) in order to determine if our baby had CF. We chose this test as we knew the decision we would make if our baby had CF. The CVS came back a fortnight later that our baby did not have CF but a significant number of cells showed a major chromosomal deformity. We were advised to have an amniocentisis at 15 weeks to test the baby's own skin cells. Once again we waited for a fortnight for the results. At 17 weeks gestation we were told by our amazing Genetic Counsellor who had supported us the whole way that our baby was fine. A harrowing experience but one I ultimately chose to participate in. I knew the effect the diagnosis of a major condition would have on myself and family. Pre birth testing is a choice, the counselling received before any medical procedure is thorough and empathetic. It gives the parents the knowledge to make an informed choice and to be emotionally and physically prepared for the decision they make. We now have a extremely headstrong (she would have to be to get through the odds that she did!) two and a half year old daughter who is the apple of her big brother and sisters eye. (and just FYI - my husband had a vasectomy when our daughter was one week old!)

A Mother's Story

I looked forward to having an ultrasound scan. 8 years ago, for my 3rd pregnancy, the technician showed no sign that anything was wrong as she scanned me.

The Doctor told us that there were some serious problems with this baby (I was so pleased that he called it a baby). Baby had no right arm at all and the femurs (thigh bones) were very tiny. Somehow I came out with this little speech - about how this baby was already part of our family and we loved it very much and that we were going to carry on with this pregnancy.

After a second scan the radiologist stated that there could be mental disabilities - this child would never walk -she would be an invalid for life - she made it look as bleak! And we believed her - she was the expert!

There was no evidence of a stomach on the scans so we were prepared for her to not have a proper connection to her stomach. Two days before she was born the paediatrician prepared us for the fact that she may not ever take a breath if the internal condition was worse.

None of that eventuated.

I'm glad we had the scan, it helped us to prepare ourselves and our family for our baby’s arrival. It meant the medical staff were ready with emergency procedures that they may have needed. We needed that information but we would never have used it as a reason to kill her.

Her condition is PFFD - we found out by going onto the internet. For me, it is useful to have a label - I can find other children on the internet and talk about the treatment available to them and what I can expect as she gets older. People with bilateral PFFD are very rare (and will remain rare with easy abortion). If I had known what it was called before she was born, I could have had more support and helpful information.

Far from brain damage my child  is cognitively ahead of her peers. She reads well, draws superbly, uses the computer, her memory is amazing. She drives her electric wheelchair like a racing car. She loves speed - swings, trampolines, rides, being towed behind a boat on a rubber tube .. She gets along on her feet and hand independently. She can do one-hand handstands! She has lots of friends. She does things with one hand and toes that many of her friends cannot do.

My child is a beautiful, delightful, gorgeous, funny little person - we don't even notice her disabilities. Sure we'd love her to be tall, and to have two arms, but she's just herself and we wouldn't be without her.

I used to think pre-birth testing was a great idea but...

I used to think pre-birth testing was a great idea but then I met a wonderful boy who happens to have Downs Syndrome. He doesn't learn as easily as his brothers and sisters and has other difficulties in his life but he lives a full and happy life. He has learnt sign language to help him communicate and is a delight to be around. If his parents had aborted him he would never have had the chance to teach the people around him just how happy and fulfilled life can be despite all the difficulties.

My life is better for the experience of getting to know him. No one should have the right to decide that someone else's life will not be worth living.

Pre-birth testing as a personal choice.

I've had two high risk pregnancies indicated through screening, and two amnios as a result of those tests; one baby had a normal karyotype and one had an abnormal karyotype.

The choice that my husband and I faced was heart-wrenching, I wouldn't wish that situation for anyone, but we were grateful that we had the choice to make.

Pre-nantal screening empowered us with the knowledge about our babies' heath that we needed to make decisions for the future.

I strongly advocate pre-natal screening for those who want it, and whilst I admire those who are strong enough to decline it, I know that it is an important resource for NZ families.

No Choice in the End

I have a daughter with Down Syndrome, she is the youngest of 8 children. During my pregnancy I was called back for a second scan before there apparently was a problem. The Dr asked me if I was prepared to undergo further testing and make a decision if he found something was not right. I indicated no, I would never end a pregnancy because of a suspected defect. His advice then was to hope for the best and good luck.

When my daughter was born with a very obvious condition I was so angry I had been denied the right to access appropriate support and information while pregnant and also prepare the family for her birth and what it would mean having a special needs child as a sibling.

So pre-birth testing is important but there must be information and support to assist the parents to make the best decisions for themselves and their families. It is the parents right to choose but how can they make an informed choice if they are given no information or options and if Drs, medical staff and counsellors are not available or trained to assist.

My daughter is now 8 and a much loved and valued member of our family, the community and the school community. I cringe when I think of life with out her and I feel for those people who abort children with Down Syndrome. Were they given appropriate information and support because I am also starting to see less and less children like her in New Zealand and very few where I live.

I have to ask

"how do you define a perfect child" and "what criteria is used for this defination"???

I wasn't aware there was a test available

I have a form of Autism and was unaware that I could pass it on to my son. I was also unaware that there were tests available to check for genetic defects. I honestly can't say now that I would be better off without him because I love him but I probably wouldn't have continued with my pregancy if I had of known. It sounds like I'm satans spawn but I know how hard it is growing up 'different' and I feel guilty every day that I inflicted the pain and torment he lives through from others every day. He is teased and bullied for being different and then there are the lack of co-ordination, social skills and the learning disabilities.

If you had the option would you put another human being through that every day of thier life?? I still have issues and I know how hard it is for him.

WON'T be doing it again.

The Bottom Line

44 years old, 6 years after my last baby and at least 4 years after we had given up hope of having another child suddenly Joy Joy happiness happiness another baby. Almost immediately my husband of 23 years said we have to have all the tests, we owe it to the family we already have, etc etc. I sort of agreed, being the child of a forty two year old mother, I figured it"ll be ok. My midwife who had delivered my other two children tried to advise me that I really need to think through what I would do with the results and being in the la la land that some of us newly pregnant mothers go to, I booked in for an amnio, went through the proceedure, all good and then reality hit, first week bad dreams, then constant self questioniong etc etc, then a few days before results were due I told my husband that I had found my bottom line, I was unable to consider termination of our child whatever the result and that i had no right to be the judge and jury on the right to life of my child, and that perfection is not guaranteed. He understood how I felt and I think for both of us it was one of the few really ethical decisions we have been faced with in out lives, and the discussions that took place have also strengthened our relationship. Our pregnancy has a few weeks to go and we look forward with joy to meeting our new babe. The blood pressure blowout that those two weeks of stress created have mean"t a more visits to the health system, due to the care and support of our midwife as she does all she can to make sure we have a healthy and safe birth.

Fertile? Infertile? Pregnant? Not pregnant?

Our journey from BOTH being tested infertile, to having children has seen us on the roller coaster of tests, fertility work-ups, to drugs, depression, you-name-it.

We were due to undergo ICSI but had conceived spontaneously instead. The operation would have killed our baby. This was one of the pre-natal tests that was ever right!

The next positive (spontaneous) pregnancy test (albeit that I said it was too low for dates and the midwife didn't appear concerned) was marred by a quantitative one 3 days later telling us we were loosing our child which the hospital took to the lab ('for tests') and never returned (yes, they lost our baby).

The next time (another spontaneous conception) 2 serum HcG's and 3 urine tests were all negative until I was 8-9 weeks pregnant.

The next (yet again spontaneous) standard pregnancy blood tests showed that I had gestational diabetes which was not the case. Ultrasounds showed three soft markers for Downs, which the baby did not have; and prompted further post-natal scanning and appointments for each of the anomalies, which were each unfounded.

And these are only the tests I can remember off the top of my head!

Hindsight is a wonderful thing. With it I would have flagged all the tests, all the interventions, all the shift of control from the two of us to the gods of medicine. I would have bowed out of the fertility symphony and its orchestrated movements (read that timed sex).

I would have wanted to be more positively and pro-actively supported by counselling through to spontaneous conceptions or to accept a lifestyle without biological children. I would have wanted instead to be empowered more to trust in my body and the autonomic process of birth.

Definately a must......

Well, I was told I couldn't have kids until one day I noticed my tummy was getting bigger!!

I was diagnosed with a Pituritory Tumor years ago, so the past years I've been on medication. I ended up on the highest dosage of medication which is a very strong dose, and if you end up pregnant, you have to stop taking it. But, of course I didn't know I was pregnant as I hadn't had any periods for 18 years. So, when I went to the doctors to get a check up re my tumor, I thought I'd better mention that my stomach was doing weird things (not even thinking about the possibility of been pregnant). So, he suggested I have a pregnancy test and I just said `yeah yeah whatever'..... Anyway, it came back positive so of course my first words were "how did that happen?"........

As you can imagine, I was pretty shocked/excited/stunned etc. Told everyone and anyone. I then had to go for a scan and they estimated that I was approx 4 and a 1/2 months!!! Crickey no wonder me clothes were tight! So, when I went for a scan, they wanted to check a couple more things and sent me to Waikato Hospital. They didn't have good news. The little fella had a hole in the heart, but on of his atteries were blocked so no blood was getting through and the other arterie was nearly blocked as well, hence no blood going to his brain so he already had down syndrome. They suggested to have a termination as they didn't think he'd survive the rest of the pregnancy either. As you can imagine, the world came to a stop then. Words cannot describe how I felt at that moment. I'd told everyone bout the pregnancy, now I was going to have to tell them it wasn't going to happen.

Anyway, they were going to make me wait 3 weeks to have a termination!! You can imagine what I told them! So, it was 1 week I had to wait - even that was too long. That week was the worse time of my life, feeling him move but could'nt get excited.

So, after the termination, I wanted an altopsy report done which I was glad I did as he was even worse than the specialist had told me. The pre-birth testing is the best thing to get done as you never know what is going on with your baby.

Theres alot more to this story so feel free to ask any questions. This happened 3 years ago. We had to name him for the birth/death certificate so we named him.

We don't have any kids and won't be having any as I'm still on this medication, but we have two lovely dogs.

How not being offered testing affected my life.

A few years ago I found out I was pregant- though I was in a solid relationship with the father, it was unexpected, and not really what either of us were wanting at the time. I had consumed alcohol and a small amount of recreational drugs before finding out I was pregnant, and it was my understanding that the first trimester is when the foetus is most vulnerable to the effects of these activities. The thought of having a child who was damaged by foetal alcohol syndrome or similar disabilities and would have to suffer the lifelong effects was to me terrible, for all of our sakes, and this was one of the main factors in my deciding to terminate the pregnancy. I consider myself reasonably well informed about medical and scientific matters and it was my understanding that there was no way to test for foetal alcohol syndrome nor any other intellectual/physical disability due to alcohol consumption. Not that I was offered any tests during abortion counselling or the medical checkups. If tests for serious conditions like this were available and routinely offered to women, we would be in a much better position to A- make informed and compassionate decisions about termination and B- be better equipped to deal with the imponderables that haunt many of us who have chosen to terminate, since our decisions would have been made with appropriate knowledge instead of guessing and panic. I dont regret my decision to terminate, but women need to have access to as much information as they personally require to make the best choice, for everyone involved. Information is power, and personal power and responsibility is the most important thing in a deicision like this.

I might not have been born if my parents had tested me

I have myotonic dystrophy and if my parents had been able to test for me having this, i might not have even been born. This scares me, as I have had a wonderful life, am married and madly in love with my husband and enjoy life and doing everything that I still can. So, sure, I can no longer rock-climb as I can no longer hold up my body weight, and I might not be able to do the Hump Ridge Track in 3 days like most people, but even though I have other health issues, which are mainly muscle related, and even if I die younger than normal (im nearly 40 now), I would have lived my life to the fullest, loved in my life to the fullest and enjoyed every second I am alive. Should I have been not allowed to be born? Some say yes, I say no - let us live and make the most of what we have got, what right does anyone else have to say I should not be born and enjoy what I have? How many fully healthy people are as happy as I have been and are in my life? There are not many that I have met, because as they have all their health, they do not realise what a precious gift life is and how to enjoy what they have, and to not complain about what they have not got. I am so happy that pre-birth testing was not available when I was born, as I would most probably not have had a chance to live, love and learn and enjoy being me.

Fertility is personal and political Story : Fertility involves a range of very personal physical, emotional and spiritual issues. Politics has often been dominated by males seeking to control women's fertility. The input of women's stories is vital for good public policy.

I had seven pregnancies and my two wonderful adult children are my most creative achievements. One lives with disability and one with effects of serious illness, but that is part of their identity.

When I was young I had two terminations which I do not regret. The secrecy and stress was hard as the law saw women as incapable of making their own decisions. But I was adamant and would have sought illegal terminations if necessary. (There is a school of thought that the children born later were the same souls which were not ready to be born then either).

Years later I had two miscarriages and a stillborn child. These pregnancies were much wanted. My first hospital experience was horrific as I waited for hours for a D and C. By the time of my stillbirth the hospital care had greatly improved and although the induced labour was excruciatingly painful I had constant support and the tiny perfect dead baby was dressed in little clothes and she and I were treated respectfully.

At about 18 weeks I had had an amniocentesis because of my age (40). This is an unpleasant procedure whereby you can see, feel and hear the needle going through the abdominal wall into the amniotic fluid hopefully just avoiding the baby. It didn't readily heal and for a while the fluid continued to leak. However, worse was the call a couple of weeks later advising me of the detection of a rare chromosomal abnormality. The geneticist indicated the effects could range from unnoticeable to some intellectual impairment. As I already had a child with a disability it didn't take us long to decide to proceed with the pregnancy. Unfortunately, a later scan showed the baby had died. The cause of the stillbirth was not clear but it could have been the amniocentesis, the chromosomal irregularity or something else.

With all losses you never really get over it but the pain dims over time. There is also the grief over infertility - painful in our child oriented society.

I hope that when women choose to have children they will be supported to have the best possible pregnancy and birth experiences regardless of any disability of the mother or baby, or issues of socio economic, family or ethnic, background. And that our society will welcome all children equally.

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