To think that Julia Hollander who put her severely brain damaged daughter into care did the right thing

[pigletmania]

I have just picked up this weeks Pick Me Up magazine and have read the brave story of a woman Called Julia Hollander and her husband who put their daughter Imeogen who has severe brain damage into care as they could not cope. The daughter is now thriving and doing so well in the care of Tania a professional carer. They are still a part of their daughters life and are involved in decision making regarding aspects of her life.

When this couple spoke out about their story they recieved a lot of bad press and was unfairly vilified by people on Mumsnet who if they have not been in that situation have no idea what this couple are going through. They put their daughter into Tanias care so that she would have a better life, this in itself is very selfless and putting their daughter first.

You can't know beforehand. Testing could have told me I was at high risk of DS (but wouldn't have had invasive so couldn't have given anything more than a risk factor).and even if we were given a clear result for chromosome abnormalities we still wouldn't have known whether the new baby had the same disability as DS1 (more severe than DS) so well what would be the point? Actually we had screening as a way of screening for anencephaly. We decided we wouldn't do anything if we had screened high risk for anything else.

And anyway if you find out you have a child with DS i'm not sure how that would prepare you other than removing initial shock and highlighting potential health issues (usually fixable these days). I don't think you can prepare - ultimately you end up with a baby - no two are the same- you don't stress about preparing for an nt baby.

I do know lite of children with immie's level of disability. There are quite a few at ds1's school. Yes she is severely disabled but the parents I know (lots of them) haven't taken the Hollander route. The issue in this story - the driving force respondible for what happened isn't immie's
severity of disability - it's the Hollander's lack of ability to cope with disability.

You cannot test for the majority of things anyway Maria, you can test for what the medical know about, or what you know runs in your family genetically (like cystic fibrosis etc) The vast majority of people I know with severely and profoundly disabled children did not make a choice at all. They discovered post natally as the condition their child has was not pre natally diagnosable. The same, I believe happened with Julia Hollander and her husband. The same that happens to thousands of people.

You cannot test for the majority of things anyway Maria, you can test for what the medical profession know about, or what you know runs in your family genetically (like cystic fibrosis etc) The vast majority of people I know with severely and profoundly disabled children did not make a choice at all. They discovered post natally as the condition their child has was not pre natally diagnosable. The same, I believe happened with Julia Hollander and her husband. The same that happens to thousands of people.

I don't know anyone at ds1's sld/pmld school who knew beforehand. The type of disabilities that tend to lead to sld/pmld are usually not testable conditions or occur after birth. Thank god ( IMO)

One of the most profoundly disabled children I know at my daughters school (which is also a sld/pmld school incidentally) was born to a teenage mum. She is absolutely amazing with her daughter and fights all the way for her. I know who I would put at the fron of the queue when handing out bravery awards

But tests/scans are not just about disabilities in the child. They also (for instance, among other things) look at the position of the placenta. So, for example, placenta praevia can only be accurately diagnosed through a scan. In the past women who didn't know they had placenta praevia (and before emergency C-Sections existed) would just die in labour. I'm just saying that regardless of anyone's decisions as to terminating or not, there are various other reasons to test/scan that have nothing to do with disability.

And yes I know & agree that you can't test for the majority of things. But lets not throw the baby out with the bathwater, that's all I'm saying. I fail to understand this implied negativity about medical testing. It's saved many lives, it's not a negative thing.

(And by the way, just to say, I'm not referring to amniocentesis which is a highly invasive test & carries risk of m/c with it. I'm just referring to standard blood tests / scans).

It is your views that I am questioning, not you personally.

Your reasons for scanning are just that - your reasons. Not everyone shares those reasons and scans are not mandatory ('...mum and child should have') - hence no reason to accuse them of 'sticking their heads in the sand'.

I think it is fair enough to say you need a scan to locate the position of the placenta and blood tests to make sure your iron count is ok etc. But that is different to a woman not wanting to have a triple test etc for example. I am not arguing with anyone btw, I am just poiting aout you can have tests to ascertain maternal health and positioning of the placenta and growth of the foetus/baby without having any of the 'other' tests

My (religious) friend did have dating scans (which presumably also scanned the position of the placenta) but she deliberately declined any blood tests. Once her babies were born, she asked that they had brain scans to check for any abnormalities - she didn't want (or I guess, need) this information when her dc were in utero. That was her choice and her prerogative.

Manny: Well if it's my views you're questioning, not me personally, please do so i.e. don't attack me in a personal way, which you have. It's quite upsetting & angering particularly on a thread such as this. When you say to someone their comments are 'inane' or that they show amazing ignorance etc I'm not sure how that is addressing any views.

I did not say mum & child should have. I said 'certain conditions that the mum & child COULD have'. Should was a spelling mistake. And of course my reasons are my reasons. And my opinions my opinions. What else could they be?!

Angry: very true what you say. There are differences between tests. Some test for disability, some don't. My question & thought was just that- if someone has already made up their minds about not terminating under any circumstances why not be prepared? Again, this is completely my own view on this. I think I would just prefer to know & be prepared.

Well, I find some of your views 'upsetting' and 'angering' because they show ignorance and inanity.

...so I guess we are quits!

Does being there mean being the parent only? What about the aunt, the close friend, the grandparent? I appreciate the particularity of every different experience (and after all each person lives through such experiences in different ways) but if we say 'only those who have been there can understand' (defining being there in a particular way) then surely discussion can't really continue? People can empathize, imagine, think of, help etc. (or they can be very close to a child with SN who is not however their child).

Maria, I presume some people choose not to know because their baby is their baby. They have gone into conceiving for a child and are willing to accept what will be. It is not necessarily a religious viewpoint or a romantic one, it may be just a natural instinct. Plus, details were released yesterday in which 92% of confirmed pregnancies for down syndrome were terminated and women are being questioned by medical professionals as to why that figure is not 100%. The down syndrome association, quite rightly, are concerned as to why it is so high and whether pregnant women are being given up to date information about learning disabilities. So I could and can understand if women chose not to know this information because they were or are frightened that they would be pushed into making a decsion they did not want to make and feel it is an easier and more straightforward route not to know. We are all different, that's what makes the world

OK Angry, I see your point. If there's pressure involved (and I believe what you say that there may be in many cases) it may then be better not to know, just so that one isn't subjected to that pressure. Hadn't thought of that angle myself.

The parent has full, day-to-day, year-after-year responsibility. The parent is responsible for obtaining the best/appropriate education, any necessary equipment, fighting for respite care, benefits and so on. Other relatives may be close but they don't have the responsibility at the end of the day.

I think, 'only those who have been there can understand' is a bit similar to trying to grasp what parenthood is like before you have dc.

I aggree with riven, people can not fully understand what it is like untill it is their child.
My brother thinks he knows all about caring cos he has a niece with cp and a dad who was ill, yet he has never done it himself, it is 100% different when it is your child.
as for testing, can't see the point tbh, the money wasted would be better spent on stopping all the problems that happen due to negligence at birth.

Maria2007 but a lot of antenatal testing is precisely about terminating pregnancies if a disability is detected. I think there is no clearer evidence of that than the fact that 92% of pregnancies where downs is detected are terminated.

I had no antenatal testing during my pregnancy apart from one 20 week scan. And even that was more so that my dh could see the baby - I never thought of it as a scan to determine whether my baby had a disability.

I had no intentions of terminating a pregnancy anyway so I saw no reason for testing. Because even if a disability were detected and you were to educate yourself about the disability beforehand, you would still really be none the wiser as all disabilities are different and most disabilities have a spectrum so you couldn't possibly know how your child were to turn out. So why not just enjoy the pregnancy and deal with any potential disability if/when the need arises?

I didn't have the triple test or whatever it's called because I had decided that I wouldn't terminate unless my DS had a condition that was incompatible with life which would be picked up at the anomaly scan. I had polyhydramnios in late pregnancy which can be caused by foetal abnormality and had to have lots and lots of scans in the last few months. This wasn't remotely reassuring and just made me hugely anxious and didn't help me come to terms with it at all.

Actually I think alot of peoples close family can understand and it is a bit patronising to assume they cannot.

and yes, I do think that only a parent can really know what it's like. Because only a parent has that bond with the child (or not in the case of jh).

It's a bit like my sil telling me that she knows all about babies because she has friends who have them. We none of us really know what it's like to be a parent until we have our own children. Yes we can make a judgement based on the things we see of other peoples' children, but we make the judgement from afar, and without a maternal bond. And it is only when we have our own children that we find out what it's really like.

The same applies to children with severe disabilities. We see them from afar, get a snapshot into their lives and the lives of their parents, and we perhaps make a judgement call based on that (sadly for some that judgement call is that they wouldn't be able to cope), but again, it's made without the parental bond, so the feelings towards the child are different from the outset.