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Hardest days of my life :(

3.3K views 27 replies 22 participants last post by  matthewoutram  
#1 ·
My world came crashing down on Wednesday when me and my partner went for a 20 week scan. Half way through the scan the lady said that she was terribly sorry but she had some terrible news and would have to stop the scan.
She then got the consonant to do a scan. She also confirmed the terrible news. The baby was found to have a severe case of spina bifida with hydrocephalus (fluid in brain) not only that the spinal bifida is serious and part of the brain has formed at the opening to the spinal cord that's damaged. This means the baby will not be able to walk / be in continent, high chance of being mentally ill etc.
our choices are limited. We can continue knowing everything and know the child could suffer or we can call it a day now and let him rest in peace. Thing is I can't being myself to terms with this. I cannot get my head around burying a child so young. It's tearing me apart. Has anyone ever been through this?

Sorry I know this is a sensitive subject but I just have to talk about it. I don't wanna end up making the wrong decision as I don't want my child to suffer but I also don't wanna say goodbye :(
 
#2 ·
I am really sorry for you both. No parents should be faced with such a decision. I myself don't have children yet, however I know some friends/family that were faced with a similar decision. In all honesty it's always a life of suffering, both for the baby and for you and your partner. It's something that only you and your partner can decide and the only suggestion is that whatever decision you take it needs to be both deciding.

Think about the baby but also think about yourselves as without you two things will be even harder for the baby.

I wish the best of luck and strength for you both... :(
 
#4 ·
Removing the emotion from the situation then its very clear cut, a life of suffering and hardship for all involved or the immediate pain of ending it now before the suffering begins. I know which I see as the correct decision, take the pain now and then work to get over the difficulties and maybe try again, but of course you have many very strong emotions surrounding this decision so you have to do what you see as the right thing.
 
#7 ·
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#6 ·
I cannot begin to imagine how this feels as I do not have kids, I can't offer any advice only sympathy. Whatever you and your partner decide to do I'm sure it'll be the right thing, stay strong, good luck at this terrible in time in life but know that no one with any heart is judging you.
 
#9 ·
So sorry to hear this, it's a terrible place to be in.

There have been some wise words posted above but only you and your partner can make this decision.

All the best which ever route you go down...
 
#10 · (Edited)
Just to echo what everyone else has said, in particular Ssh's post.

I know when my wife was pregnant early days we were very blasé about having the Down's test that we would terminate if there was a high risk/positive test.

But when we saw our baby on the 12 and 20 week scans we are not so sure we would have gone through with the termination had the tests shown up anything, which for us they didn't, but therefore I understand a little how the decision is not as clear cut as it might seem.

What ever your choice, it won't be the wrong decision, there are consequences either way and I am sure that for what little it's worth everyone here will support you as best we can.
 
#11 ·
Thoughts are very much with you... our little girl has many complex issues and disabilities. We did not know until she was about 10 months old, and we are still learning and coming to terms. She is now 7. She is lovely. Would not be without her.
 
#17 · (Edited)
Dansa my thoughts are with you during this incredibly tough time.Your post brought back a lot of emotions and memories. Whatever your decision it will be the right one for you all. If there is a god he is one cruel bastard.

I share the following in the hope it may help in someway and if you want to chat more feel free to pm me.

Mediaboy, Same here. My little girl is nearly 9 in age and wouldn't be without her or change her in anyway.

To cut a long story short she was diagnosed at about 3 yrs old with mecp2 duplication syndrome, a rare genetic disorder. This condition was only discovered in 2005.Most common in boys and therefore little known about it in girls. At one time she was one of only a few girls known worldwide to have it .

http://www.mecp2duplication.com/cms/index.php?option=com_content&view=article&id=49&Itemid=29

Saying that its incredibly, incredibly tough and one I wouldn't wish on my worst enemy. She has many health issues and disabilities also. She cannot talk (except a few words, i cried when she finally said dada) she/ we have been learning makaton for years, shes good im rubbish! she is still in nappies. They said she would never walk but she can, although very unsteady. She needs 100% help washing and clothing herself.

In and out of hospital for a lot of her early years poorly and having test after test until they finally diagnosed her at about 3. i was a selfish arsehole who didn't deal with it very well. me and mum spoke in the hospital car park after diagnosis and we never spoke about it again. i drunk a lot ( even more than racks), my ex finally had a breakdown 6 months after diagnosis and now I play weekend daddy.

Doctors only know so much and she has far exceeded there expectations and initial diagnosis and is such a happy girl she lights up a room wherever she goes. Touch wood to this day she has never fitted as the majority of boys do but she is often poorly. What others will take for granted in " normal" children is a major achievement for her and she never ceases to amaze us all. We are blessed to have her.

I've now come to terms with it although I will never fully accept it and probably never will.

I was shitting it the whole time of my new partners pregnancy and became a dad again last year and seeing the two of them playing is heart melting. What the future may hold for her who knows and not one i care to think about anymore as long as she is happy.
 
#12 ·
We might not know each other Dansa5, but I genuinely feel for you.

I wish I could offer some words of wisdom as others above have done, but I can only echo their sentiments.

I wish you and your partner the best and hope that you both can find the strength to get through this period in your lives.
 
#13 ·
Saddened to hear your news Dansa5, our thoughts are with you.

A tough decision to make, that only you and your wife can decide.

Whatever decision you make will be the right one. You will love the baby whatever.

I can only offer my condolencies, and maybe to consider the quality of life of your child.

Simon
 
#15 ·
Well, I can say that we have been in that same boat and I know what you must be going through, for which I am heartily sorry. In our case, the diagnosis was Edwards Syndrome, which is horrific and would have resulted in much suffering all round with the likely result being the child would survive less than a year. As painful as it was at the time, and we still feel a sense of loss many years later, we made the decision to terminate. Had it been Down's, I am sure the decision would have been a lot harder but Edwards Syndrome is particularly nasty. Faced with the same situation again, our decision would be the same and I can only hope that whatever decision you make, will give you peace. Good luck.
 
#16 · (Edited)
Thank you all for your thoughts and kind words at this horrible time. We have spent the last few hours with yet another consultant. We also paid for the 3d / 4d scan should we decide its best the child is not to be born so we have a good memory of him :)
 
#18 ·
I felt really humbled reading your post and the responses you have had. You face a decision that is truely monumental.

I don't think I am even near being qualified to imagine the emotions that must be washing around

Please just let me say one thing. Just listen to the experience of others, reflect and talk it through with your family. Let it settle and I think you might feel the right thing to do. This isn't really something that logic can dictate

Good luck - my thoughts are with you

m33
 
#19 ·
Dansa......fortunately we never got to find out if we had made the right decision...

My beloved miscarried and the decision was taken out of our hands.

26 years later, we still wonder "what if........."
 
#20 ·
I read this with great sadness and felt inadequate to reply. It would be easy for me to do so with cold logic and this would not allow for being in that actual situation myself. I also suspect it may be harder for the mother and maternal instincts but again I do not know. We could not have kids at all so I am now imagining if that miracle had happened and THEN we had got this news what on earth we would have done. Impossible hypothetical situation. I am still with cold logic but that is easy for me to say and then I read replies from those who have been there and feel even more humbled. Whatever you do, have no regrets, it is a crossroads and you will have chosen one particular route. All the best.
 
#21 ·
I am so sorry to hear this.

I think it's even harder when you know before birth...because there is a choice. I won't even try to advise you on what to do. We all want the best opportunities for our families, but the details of how to get there vary for all of us. I wish you the best in this difficult time.
 
#22 ·
The news today from the hospital was even worse. The fluid in the brain is substantial, the other part to this is there is a huge part of the brain missing so almost a complete guarantee that the child will have severe mental illness ontop of the other things like I stated (bladder problems) the other bad news is the bit missing in the back curves in alot and its high up meaning vital organs might not work either. We were even told by the expert the child has a high chance of not surviving. And this will be increased even more with the many operations.

This has been such a hard few days and I hope no one ever has to go through this. Like mentioned yes the decision is unbearable but we have a choice to do the right thing based on the severe circumstances. We asked for just a bit more time but its looking like the upsetting thing that he may be put to rest. It's what alot of people advise us to do. Obviously the choice stands with us. We already have a beautiful daughter which we are so blessed to have. She will be 3 in June and has brought us so much happiness. We are just so sorry we might not be able to take her little brother home due to how ill he is. What makes it even harder is she kisses mummy's belly and tells people mummy has a baby in her tum tum. She will be affected by this to.

I have decided to take atleast 2 weeks off work. They are not happy about it and asked if I would be back next week. This angered me as it shows a lack of care to the situation when I work as a social care worker as it is! So I work with disabled people. U would expect them to understand.
 
#24 ·
I'm going to humbly suggest in your troubled time to ponder this decision through a different lense.

Think not which outcome leads to the greater burden or suffering.
Think instead which outcome leads to greater joy.

This opens the possibility for either choice to bring joy, btw, and perhaps alleviates somewhat the cloud under which now you're naturally living.

You have a right to a joyful, fulfilling life.

You have a right to make a choice now for yourself, your partner, your child, your family, your friends...for joy...for love. And either choice could do that.

I hope this helps, and in no way offends. It's simply a different way to consider choices which appear initially to be only about sorrow. When there's another way to look at it.
 
#25 ·
The simple presentation of this choice has already changed your life. No matter what you choose.

The only question now is: how are you going to choose to feel about the decision you come to?
 
#26 ·
hello again Dansa..

if you don't feel up to it PM me your line managers name and number, I would be pleased to explain to him/her why you wont be back next week.

in fact if you are UK I will drive to them to explain face to face.

As I said, our decision was taken out of our hands, the only other thing I will say is that the people who either disagree with the decision you make (whatever it may be) or trivialise the situation are like the dogshit on your shoe..just scrape them off and walk away, they arent worth getting het up about.
 
#27 ·
I too feel for you Dansa. Life is so precious and a good and full life more so. I too have worked with mentally handicapped people and have personal thoughts and views and whilst it is your decision of course I believe it is good to have the choice now.

As for your boss... arsehole ... springs to mind, I will join with Rackers and tell him how it is (with an Employment Law hat on!)

Best wishes to you and your family.

RG
 
#28 ·
What a sad thread. I tend to agree with the sentiment of sandjstickney, but cannot speak from experience.

I'd like to think, if it were me, I would put the welfare of the unborn child first - what sort of life will it be for the child?

Best of luck with your deliberations, your boss is an arse-hole.

Matt.