Ignorant Guardian article.

[eidsvold]

Anyone else read the 'confessional' in the guardian magazine today???? My dh saw it before I did and suprisingly he felt compelled to write to them to provide a more positive view.

Basically the story is about a woman who decided to terminate her pregnancy as the baby was shown to have downs ( amnio) and a heart defect. So you can imagine how that went over in our household. Some of the info told to her by medical professionals was appalling in terms of ignorant and ill informed. Whilst I want to feel sorry for the woman - I can't.

I am in the process of reworking our family story to send to the Guardian in the hope they will think about what they have written and be prepared to provide a more balanced view.

Even sadder to note that next week is Down syndrome awareness week - Good onthe guardian for helping to break down stereotypes and stop misinformation!!!!(NOT)

Feel free to join us in writing in to complain - if you get to read it.

sorry should read "that's the type of damage that is often done at birth"

I do think I now understand what the government is trying to achieve with inclusion. I've been a bit anti it up to now- but funded properly I can see it would be a good thing.

I couldn't read it all as I just found it far too upsetting. What I did read though confirmed to me that I personally would never be able to terminate in similar circumstances. That probably owes as much though to fear of unbearable guilt as to the moral issues in isolation.

I think most of all we have to realise that we never know the whole story about other peoples lives and thier decisions. It is easy to say what we would have done but we were not their in the midst of the pregnancy hormones and the shocking news that our longed for child may have a disability. People judge other people far too readily I think and support and compassion should be what we fisrt think about rather than what we would have done.

I had to have a CVS with my daughter - both myself and my husband were 25 when at the 12 week scan we were told that there was a very high risk, considering our age and the absence of genetic abnormailties in our families. They took us into the 'bereavement room' to give us all of the facts - past hoards of very far gone pregnant women, the medical profession being as tactful as usual. I had the test done the day before millenium new years eve and had to wait 6 weeks for the results - it was a long six weeks and in that time I spent every minute thinking about my life and the baby's life - my husband said I should consider him but he, my father and my step mother said without even considering anything else that I should have a termination. I would not have had a termination if my child had had DS but I knew other people who had had downs children and thought that they were wonderful human beings and gave a lot more than they received in most cases. Saying this if it had been somthing that had affected my child to such a degree that she would have been in constant pain or had no senses I would have had a termination with out a second thought.

What I am trying to say is that we are all conditioned as we grow by factors around us and other people, this woman made a choice that some of you may think is wrong but you should not judge - the positive message in this thread is that we in our culture - have the ability to make choices like this, something that is denied to far too many people.

I do agree that abortion should be carried out a lot earlier than it can be in most countries though. In Sweden they have a hospital unit where most children born at 24 weeks survive - I think more than anything this is the shocking thing about this story!

But Boe- that's the problem. Your husband, father and stepfather thought you should terminate without even considering any other options, or even knowing anything about Down's. How can someone going through the stress of a termination be right if they don't even know why they are terminating?

Jimjams; of course you wouldn't send a child back if a disablity became apparent later in life. Once you decide to have a child and give birth then you are making an unsaid vow to look after that child. Rather like the 'in sickness and in health'. But where does that responsiblity start? Is a woman not allowed to have a change of heart about wanting a baby because it has been diagnosed with DS? Does she have to have it because she wanted it the day before but then feels unable to cope? I know you have a hard time understanding why someone would feel like they are unable to cope, or why they feel like the impact on the family would be too much. On this thread I gave my reasons for considering a termination in such circumstances. I don't want to go into it here again as I find the whole idea so painful. But due to my circumstances I couldn't honestly say that it would not be detrimental to bring a child into this world who was going to, realistically, need more help for the rest of their lives than a child who didn't. And yes I know that my children could get sick later on, for goodness sake, look at me, my mum couldn't know that I would be diagnosed with MS when I was 19. But as said earlier, you make the choice about the life you want to lead, and that includes minimising risks and sometimes taking the 'easier' road.

Jimjams wrote "However terminating a wanted child who is then shown to have Down's does horrify me. " Maybe this can be explained by something I learned from some studying about the postnatal period. It's common for parents who are told their child has problems to feel as though they have been bereaved and they then experience a spell of grief and mourning. They have lost the child they thought they were having and they have to deal with a new image. Sometimes they just cannot come to terms with that new image. Maybe it's not logical or a rational arguement but it is a genuine emotional reaction.

pie- your situation is different from most, and you would have many more factors to consider than most. And I can understand the reasoning behind your decision. But your decision does seem to be based on fact and related very much to the postion you find yourself in. I can't imagine the sorts of things that would be difficult for you to do, so it's hard for me to know what I would do in your situation. Obviously my views are formed form the position of being fit and healthy myself- as most people in the discussion are. The tradgedy in the article is that the woman didn't appear to really understand why she was terminating. Or at least her reaons didn't seem to be based on fact. And it was all so quick (not that you can really hang around at 23 weeks of course) that she didn't have time to find out enough to make an informed decision. Others have said it- maybe we should talk through our decisions before going for screening?

However I do understand the impact of taking on an extra disability. I've written more about this aspect on the parallel thread under special needs. For example I would find having another disbaled child very diffuclt. Not the disability, but to have to take on another battle to get basic services. This is the main reason I haven't decided whether or not to go for a third child yet.

suedonim I agree completely about grieving.

Last week I met up with a family ( mum and 2xDDs) where the oldest child has the same condition as DD. We mums talked about how we had both just felt absolutely shattered when our daughters were diagnosed and how we feel like we are going through a grieving process, having lost the children we had.

This weekend I left DD at home with her dad whilst I went to the NEC. I stayed overnight with a friend and found myself anxious when her children started eating, tensing myself ready for them to start having problems. I had to force myself to chill out and remember not all children regurgitate their food.

I cried myself to sleep on Saturday night, not for the first time in the 15 months since symptoms first appeared. I still can't accept this will continue as it is doing.

SueW, am so sorry your dd isn't recovering yet. I know exactly what you mean about grieving for the child that they aren't.

Personally, I don't know how people who know they are going to have a disabled child, can go through with having one. It takes over your life, the worry, the constant doctors appointments, the tears, the stress, the pain of watching them dela with their condition. Why bring on all that suffering when you have a chance not to? people talk about morals as if there is a high ground..but there isn't one when the choice is to bring a severley sick child into the world, or not.

Another way of looking at it surely, is that for the child you choose not to have, there will be another one you have instead, that would never have been born otherwise...a child that would at least start out its tough life with its health? I hope that mother in the article goes on to have a healthy child and can lose some of her feelings of guilt.

How awful that Colorado allows such late abortions. I am truly not anti abortions but I really strongly do feel that the line at which abortions are no longer permitted needs to be quite considerably less than the date at which babies can survive if they are born premature. I'm not criticising people for going ahead with abortions this late but strongly criticising the law for letting them. I know it is all about choice but in most places we can't choose to abort past a certain cut off date - society decides when that cut off date should be, not us as individuals.

Yes, Jimjams and others , perhaps the counselling should take place before the testing. I've decided having read these threads and others that if you get so much pressure from the medical establishment then it's just not worth it. Also it seems that many tests are not that reliable anyway and you might just end up worrying throughout your pregnancy about a medical condition which turned out not to exist anyway. I think suedonim expressed my feelings on this much better than I could so I'll leave it at that.

oh now I've posted I wish I hadn't!
Sorry everyone if I sound an angry woman today - I've been thinking about it all night and that article has really upset me now.
No offence meant to anyone and sorry again if I sounded aggressive.

Lil, am in a rush here but want to throw in that my eldest dd, a perfectly normal, intelligent little girl of nearly 4, suffers (and I really mean suffers) from moderate/severe eczema. Until very recently she also used to get up 4+ a night. If I had to say which one of our children had the most miserable time and caused us the greatest stress I'd have to say it's definately the supposedly normal one. My younger dd with Down's syndrome has a perfectly fine life and is a lovely child with model behaviour, so disability does not equal wrecked life and parental stress.

Agree with Aloha - I'd very much like to hear the consultant's side of this story, or a viewpoint from someone in the medical profession who is faced with late termination situations like this.

I also hope your article gets printed, eidsvold.

I have been thinking about the adoption option. I couldn't bear to give birth to a DS child only to see him or her adopted. To me this would feel even worse than termination - and I honestly don't know if I could go ahead with that either. I have never been faced with that situation.

I still feel mothers need that choice. What would happen if you take it away completely, and mothers are told they must continue with their DS pregnancy because the news falls after the late terminaton cut off point? Some mothers will no doubt find their DS child brings so much that's good into their lives and will thank the state for making it impossible to terminate, but to other mothers this state intervention might be the final straw, causing all sort of bonding problems, depression and lasting resentment towards their child if they choose not have thier child adopted. How can the state force a mother to accept and love her child?

FWIW, I won't have any more children if I can help it. I will do everything I can to avoid getting pregnant. If I found I was pregnant I would be utterly devestated. I can't face the idea of having to deal with anything else that isn't just an easy ride.

I thought two years of breastfeeding and sleepless nights was hard - it was a walk in the park compared with this. And yet many would look at DD and wonder what on earth I am worried about.

Lil - don't feel sorry for me - I knew my dd had a very high almost 100% chance of having Down's syndrome and my husband and I chose to have our daughter. ( also has a heart defect) In no way is our life dificult... yes we spent six weeks with her in hospital in total... yes we had a time of it when she was in hospital having open heart surgery...but day to day she is a dream to look after, sleeps through and has done from the day she came home from hospital at 3 weeks old, eats well, is very calm and generally content and is making good progress developmentally. In fact, what surprised me was the number of babies and children having surgery and care for heart and lung defects at the hospital where dd was. Most of them did not know their child had their condition until after birth. We knew at 22 weeks in utero.

Sure we have had to give her medication and feed her through a nasal gastric tube for three months .. but she had her feeds, she needec changing, bathing, burping and loving... like any other baby.

As for suffering - the joy our dd brings us and others is no suffering at all. In fact, we consider ourselves blessed to have our dd.

SueW - you don't have to answer if you don't want to- what is wrong with your child?

I'll second 2under2 on the eczema. DS1 used to have very severe eczema- we had to wet wrap every day and he was constantly itching. It was probably more of a pain in the arse than the autism- especially when he wasn't able to sleep. I am continually grateful that its not a problem anymore.

Interestingly I had to put together a video this weekend as we're off to BBIC this week for an assessment. I just went back putting together relevant bits (eg DS1 saying round and round the garden a year ago- so they can see his speech hasn't come on). And the weird thing is you can see clearly when he became autistic. It was following the eczema herpeticum he had at 11 months. Video of him at 10 months, copying words, fantastic eye contact, following instructions ('get the monkey, where's the duck'. Then some video of him wth the eczema herpeticum- still there, then some video about 6 weeks later and he's gone. DH said he remembers going to get the third lot of drugs for the e herpeticum (prescribed by a consultant) and the pharmasist queried at as it was "very strong". So I see......

But you know for a long time after that we didn't know he had a disability, and everything carried on as normal. We were having to work harder (I can see that now I have DS2)- quite a bit harder, but we didn't know that - it was just normal for us, and so by the time he was diagnosed nothing really changed. Life has become harder with the involvement of health and education, but he hasn't changed.

And Lil that argument of having a different child is one I found helpful when I miscarried, but would you really have another child rather than your DD? I thought her condition was one that would be likely to improve as she grew older (am I wrong there?- probably). I'm have to admit I'm uncomfortable with the idea of swapping DS1 for a new improved version.

Sue I'm with you. I spend so much of my time worrying about my dd, and of course I love her to pieces but I would not bring another child into this world while I know there is a chance that this would happen again. Their is so much doubt and worry hanging over dd's health, that although I'm sure she will cope, I don't know how well I can!! When they are ill and there's nothing you can do it just tears you apart.

Eidsvoid, I spent some nights at the RB, am not sure if that's where you were. But I came away really upset as I saw the number of little babes and toddlers that were having major heart surgery. They seemed so small and their parents so stressed and talking to the mothers, they clearly spent every minute worrying about their little ones (who wouldn't?). The mums couldn't work as they had to look after their children full time, and they clearly didn't have as much time with their other children. I guess it just shocked me how strong parents have to be. Eisvoid, I'm pleased that you're telling me that its not as gloomy as it seemed

Re terminations. My understanding of the last re-jig of the law a few years ago was that the cut-off date for 'social' termination was lowered to 24 weeks but there is now no cut-off date for termination due to foetal abnormality or illness in the mother, and it can be performed right up until birth. But in practise, this type of termination is exceedingly rare, thank goodness.

Lil- is the future really so bleak for your dd? My friend's little boy with the same condition is fine now (he's 4). He has to be a bit careful in cold and flu season but otherwise he's strong as an ox. I thought it got much better, have I misunderstood?

SueW, I think I can attempt a guess at how your feel re your dd's illness. A friend's dd has severe colitis and had her large bowel removed when she was 12. My friend will never accept her dd's condition and looks, looks, looks all the time for an answer. And I was the same, constantly seeking, when my ds was a severe asthmatic. I got sick to death of people telling me he'd grow out of it. I felt like saying 'Sure he will - if he lives that long.' Now he finally has grown out of it, I still tense up, as you describe, when I hear a child cough. I guess it just isn't in a mother's nature to accept these things because it feels like giving in and giving up.

Jimjams, the doctors don't know which way this will go. But they assure me we will know in the next 12 months whether she will start recovering or deteriorate. I am so pleased when I hear stories like your friends, but there's plenty of others that I come across where the child's lungs just stop coping with that next cold that comes along. I should spend less time on the yahoo sites, right? But it's the not knowing that stresses me out. I think if we were told for sure, we would psyche ourselves up and just get on with it. But we just have test after test and yet another hospital appointment..without feeling like we're progressing. I do try and remain positive normally, honest! This thread is just bringing out the depressive in me!!

I can see from what you're saying on this thread though, that once you do know what your child has, you do deal with it and its not all negative

Jimjams I just saw Suedonim's phrase "'Sure he will - if he lives that long.". That's my darkest thoughts in black and white!

oh I se Lil. At least you'll get some answers soon. It is hard not knowing what the future will bring. But there is one way to deal with it- don't think about it! It works for us.

I'll try it!!

It does work Lil. I have no idea what the future holds for us. I do know DS1 will be autistic his whole life as its a lifelong condition. I have no idea how severely affected he will be, and I have no idea whether he will attain independence. If I sat and thought about worst case scenario's I would end up depressed and that wouldn't help anyone. So I just don't think about it. He's happy now, I'm doing my best for him now and that's it.

I was quite pleased that when he had eczema herpeticum I didn't know it was eczema herpeticum as all articles start by pointing out that it can be fatal. Had I known it was eczema herpeticum I wuld have been in absolute panic. As I didn't know I didn't worry and he wasn't even ill. And as I happened to be working that week I left him with my Mum and just took time off for hospital appointement. Pondering on all the possible scenarios isn't always the healthiest way to be.

I can't spend the next however many years worrying about whether he'll be able to live independently so I don't.