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Need advice and opinions please

Well I thought it best to post my own topic here after being up half the night crying last night. This will be a long post because I feel I need to explain my situation thouroughly so people understand what is going on and can help me with this properly. I had a Nuchal Translucency Ultrasound a couple of days ago that did not go well my baby has a gap of 6mm when 1-2mm is what is normal. My obgyn is pretty certain I have a baby with a genetic problem and I went for a CVS (like an amnio) yesterday. I wont have any results until tomorrow or the next day and I wont have all the results until two weeks away. I am freaking out as my doctor is so certain there is a problem I think he would put money on it. I believe there is about a 90% chance of my baby having a genetic abnormality. I am not sure what I want to do until I have the results the only thing I know for certain is if my baby has a problem where it is going to suffer terrible pain and a high chance of not surviving the birth I will most deffinately terminate out of being merciful to the baby and myself. Down sydrome is a scary thing to me as I know life will not be easy for the child but there are different severities and maybe we will be lucky but am I willing to bet on that. There are many other treatable and untreatable conditions this test is for and of course you can imagine I am trying to find out about most of them if I can.

My partner sees this in a very black and white way, He has volunteered with children and adults with disabilities and he has seen the ugly side as well as the wonderful people that they are. To him I think the ugly side stands out too much because he is just of the opinion if there is something wrong with the baby we terminate.

My opinion is if this child has something that is treatable and can have a good quality of life why are we thinking about ending things. The most cold thing my partner said was if the baby only had severe heart problems maybe we should terminate anyway. I understand that he has worked with children and parents of the children with heart problems and he has listened to women have to tell stories of holding there children while they die. I also understand that the baby could die at birth from a heart abnormality but I also trust my doctor he has been an obgyn for years and years and he has delivered my other two children aswell as my baby that died 18 weeks through my pregnancy and I think that if there was anyone to make sure my child got into this world alive it would be him. I am very conflicted about terminating my pregnancy as seeing the baby on my resent scans moving about like normal its just hard to believe there is a problem. obviously its little brain is working well enough at 11 weeks through my pregnancy to have this little one flapping its arms about and rolling around in there. It is so hard the scan was so cute with bub's little arms and legs it was such an awwwwwwww moment then ruined by the terrible news that its almost certain there is a problem with my baby. I have to admit before being put in this situation I thought it would be much easier for me to say well I will terminate because I have such strong opinions and beliefs but it is very very difficult. I am a bit afraid as I also suffer from depression and anxiety problems that I have managed to work through and now I cope without medication but what if caring for a special needs child sends me back over the edge and back onto medication. Do I really want to put myself through that? The answer is no I hate the medication it is awful and makes me feel like a real space cadet. Maybe I couldn't cope with this anyway and the best descision is to terminate but me and my partner are not going to be the only ones effected by this.

There is my current youngest Elijah I choose to talk about him first as he is the one whom I am most worried about in all this. He has learning and speech delays and needs alot of help and time and attention that I love giving him. He is a wonderful little boy and I know he will make a great big brother. The thing is I was worried as it is about a younger brother or sister taking the attention off him but a special needs child is going to take even more of my time to a point I might not have enough time to give him the help he needs. Obviously if I choose to keep this child my partner is going to want to part in it so I will be stuck with a delemma of how do I give Elijah the time and love he needs if all my time is taken up with the extra little day to day tasks a special needs child has. Then on the other hand Elijah is really classed as special needs because of his learning delays and to be honest I am closer with him than I am my daughter. We just click together as he is quite needy and I love being needed. He can be extreamly frustrating and cure every once in a while I do just break down because he is this amazing little boy I love to bits but when you tell him to pick up his sandwiches from the floor and he doesn't understand or when he can't get the hang of which one goes on first his t'shirt or his jumper it is a little bit frustrating as a little bit heart breaking. Having his sister before him not have a problem in the world except a small speech problem that was fixed very quickly with a bit of speech pathology I know where he should be developmentally and so it is difficult to cope with especially now he is four and of course he is not stupid he is starting to realise other kids aren't like him. I think it makes him feel dumb as his self esteem has been suffering this year since starting kinder. So then I have this gorgeous little boy with learning problems who is just wonderful that I would love even if he wasn't the cutest funniest little boy around to remind me that a mother's love sees past everything and that maybe I could cope but also through dealing with Elijah I have this thing in the back of my head going if you get frustrated by him imagine what you will be like with a truely special needs child.

Also my daughter Emily will be effected by this she is 6 years old and an angel. She is a perfect kid, average at school, thinks she is princess of the world and painfully beautiful. She is also quite popular at school and very athletic. She loves her little brother to tiny pieces and wants a little sister to add to the collection but any baby is fine. She does not know I am pregnant although has realised I am putting on weight and has suggested I get some exercise. I feel like without her I never would have coped with Elijah she is so mature and helpful and takes on too much for a little girl sometimes and I have to remind her to come and get mummy to help her that she is not expected to do things for Elijah. She gives him cuddles though and kisses on his boo boo's and tries to calm him down when he is getting angry because no one understand what he is trying to say. I know she would be great with a disabled little brother or sister and would not mind at all helping out and taking yet another back seat to a child that needa lot of attention. The thing is I don't want her to have to do that its not fair on her. She is only 6 years old she should not have to shoulder the burden of mummy not having time to read her stories or the energy to take her anywhere because running after not only her emotionally taxing brother but a baby brother or sister with a disability is taking up all the energy, time and patience mummy has. We have been very lucky that her school is very big on educating the children about disabilities and things and so the children are very tolerant and very little bullying goes on with special needs kids so I know she has a good understanding but it is beside the point. She is a little girl that needs her mum too and she should have her mummy and time with her. She adores me and I know it and wants to go shopping and do things mums and daughters do I don't want anything to get in the way of us having an awsome relationship and I certainly don't want her pushed anymore aside than she is now.

The other facts are I have no support network my mum wont babysit Elijah because he is having alot of difficulty potty training and she would have to change him plus he has alot of energy and his behaviour can be appauling you really have to be on the ball with him. My partner is very stuck in his ways on not wanting to bring up a special needs child so he wouldn't be in the picture I don't reackon but with his attitude I must admit I am partially starting not to care. This may sound awful but if you knew her you would understand. I would not leave my dog with Rob's mum the one time we let her babysit Emily as a baby she woke for a feed and his mum didn't give it to her which was abuse in my book needless to say she never babysat again. In the least it put Emily's whole schedule off. So needless to say I can pretty much be certain I am in this on my own.

What do you guys think should I be panicing? Under the circumstances am I being horrible to terminate especially when I don't feel 100% ok with that myself? What has been your experience with a special needs child? Did you know before they were born? Did you already have children and how do they cope? Does your child go to school yet and what has been there experience there?

The thing that makes it hard for me is my children had their running carnival earlier this year and there is a little boy at the school a couple of years older than my daughter and he has very severe autism. He had alot of difficulty with co ordination when running and he fell over. Now when I was a child the kids would have laughed at him or picked on him but maybe times have changed enough that kids are informed enough about disabilities not to do that because two grade 6 girls came to his rescue and helped him up and helped him finish the race. How cute was that it brought a tear to my eye and the girls of course got an honorable mention in the school news letter. Maybe times have changed enough that children with disabilities are more understood and life wont be a complete nightmare once they hit school I don't know but it is something I consider. On the down side with my friend working with disabled adults and my mum working on an ambulance and sometimes having to deal with them there is also the fact that they can be aggressive and hard to handle in adulthood and may even end up in a home which would just be the worst thing in my book. I don't want that for my child as much as they take them out and do activities its not the same as having a bright future with a job or travel or starting a family. I am not sure I can handle that heart breaking part of the road we might have to take. When I think about that possibility I want to terminate because I can't handle the thought of a child that can't have a future like they should instead of waisting away in some institution as adults.

Replies

  • Hi I am going to try and reply as best I can and hope I don't say anything to upset you, I've just noticed you haven't had a reply yet and think you need someone to listen.
    As I said on the other thread I don't think bullying should be a factor as children can be cruel but they can also be wonderful, we can not wrap our children in cotton wool all the time even if they're special needs.
    I know for you the issue sounds severe and I hope the dr is proven wrong but I just want to say if you are not feeling 100% certain about your decision you need to take time out to know for certain as either way you will have to live with the consequences. Is there not a support network at the hospital that could talk you through all the possibilities and what kind of support they could offer you should things progress? This is an incredibly emotional time for you and there should be some sort of councilling avaliable to both you and your husband to help come to your conclusion.
    I've said before I don't think a person can know what they would do unless in the situation and I'm not trying to persuade you either way but with my son we get a lot of support with home visits (in fact more than i wanted so rejected some) and I would be very surprised if the same wasn't true for you.
    You need to sit down with your husband and explain just how much this is effecting you, men forget that we have the bond with the baby from the moment we get our bfp and I think it's worth you pointing it out.
    I really wish you all the best and hope someone on here can give you some good advice but I would also strongly suggest you find out if the hospital can help talk through things with you.

    I didnt know and although my sons disability is minor in the scheme of things, I think when you don't know something is wrong in pregnancy, although it's a shock at the birth you never have to deal with the what ifs, making it a lot easier to just 'get on with it' ...... from one mum to another, take care of yourself and good luck for tomorrow
  • hi,

    First of all, sorry to hear your news - not what any mummy to be wants to hear. I have a 14 month old son, George, who was diagnosed with Down's syndrome soon after birth. We had no idea, having chosen not to have any of the tests and thinking very much that 'what will be will be'. You were right in your post that you said about the different severities; we have been incredibly lucky in that George does not suffer from any of the major health problems associated with Down's, and is developing relatively 'normally' (whatever that may be!!) for his age.
    However, the progress that he has made has been largely in part to the support network that we have, and sadly it sounds as though you would not have that to help. We are a close family on my side, and we have been given so much support and opportunities for him to attend sessions at local special schools and children's centres, to support and enhance his development with people very much 'in the know'. Their impact has been amazing - for example, we go swimming at our local special school every week and just today he started swimming on his own across the pool!! I don't know where you live (we are in Gloucestershire), but it may be difficult for you to access all that is available from your local authority with your other son to look after too.
    I
    don't really have an opinion on termination, I firmly believe that it is a decision you have to make as and when you need to. And we have already decided that if and when I fall pregnant again, we would not have the tests and again let nature take its course.

    You sound as though you are an amazing mummy to Elijah and Emily and you may be right in that having another special child would take the precious little time you have with them away, and more besides. Maybe see what the definitive results are and then you might be able to make a more informed decision?

    Sorry I couldn't have been more help - all I really wanted to get across was that, in our experience, having a disabled child is certainly not the end of the world. Its not easy, physically or emotionally, and you certainly can't have rose-tinted glasses on when thinking about the future. Having said that, I don't know how we would have coped had George been our 2nd or 3rd child, with the needs that he has now and may have in the future. We have made a conscious decision not to even try for another child until George is a least 4, so that we are able to give him all our attention in these important first few years.

    Good luck with whatever you decide to do.

    S x
  • Thankyou all for your clean unbiased advice happily our initial results have come back that by some miracle things are normal. I was so scared because he was so sure there was something wrong and the only genetic problems in my family were really severe like major brain damage where the child couldn't even eat themselves. It seems if it rains it pours in my family and Rob had no cases at all of gentic problems that we know of. Thank god it is now more probable all it was is a cyst that will go away. I feel like I have won lotto its just such brilliant news. I don't mind if this one only has the learning delays my son has thats fine. I just didn't want to have a child that lived in pain and some kind of half life I am just too merciful to inflict that on someone. I know some people who have to tub feed their kids but they are pretty much otherwise normal and may actually as the grow be able to chew and swallow properly. I couldn't imagine living my whole life in a wheel chair and unable to eat or communicate without any hope for recovery. This is why I am a big supporter of stem cell research because it gives everyone hope for the future.

    Once again thankyou so much for your support and please take care of your lovely children. We are taking Elijah to a pediatrician soon for a proper diagnosis since I am concerned about dislexia, my dad has it and had to go to night school as an adult to learn to get around it and do some things normally. I don't want that for Elijah I want him to get everything he needs while he is a little boy so when he gets older he is ready to face the world. I will let you all know how it goes with him.

    Mrs S I totally understand your waiting until your son is 4 or more to have another one. Just with Elijah's special classes last year I was run off my feet. Now the school takes care of all of his extra learning needs I feel I can complete my family. I am so happy for you that your son has had none of the illnesses that go with downsyndrome. You like me must be extreamly lucky. This has been the second child I have had to have a CVS for and although Elijah's NT gap measurement was alot smaller I am not going through this again. I am waaaaay past pushing my luck. I hope all goes well with your little one if that is him in your avatar he is sooooooooooo cute by the way.
  • Ta - we think so too, although ever so slightly biased! And a big WOHOO for your news - hopefully you can go on to enjoy the rest of your pregnancy!! Keep us updated!!
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