Anencephaly support

[tommye]

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Mate, I know it's for charity and stuff but 'blacking up' is frowned upon these days.
May I suggest you try something different going forward.
Good luck x

 

[Philw]

Mate, I know it's for charity and stuff but 'blacking up' is frowned upon these days.
May I suggest you try something different going forward.
Good luck x

Can't help feel that @Barry Horne's Love Child and his doctor should also both change their surnames as apparently they don't get past the swear filter... lol

 

[kstoffee]

Thank you for sharing.

My wife and I have lost 5 pregnancies but now have our wonderful 3 month old daughter to hold. Your writing almost perfectly captured our emotions during that difficult time. The passing of the fetus at home on the toilet is etched into my brain.

 

[Barry Horne's Love Child]

I am blown away. That's an incredibly brave thing to write and share. I wish you and your family all the best, and hope that your work in hospital and charitable offer you and all you deal with as much solace as could ever be possible. You are doing a very good thing and I hope all your troubles are behind you. Good luck for the future.

Thanks mate, yeah thankfully I’ve made it to a point in which the worse of it all is behind me, it’s been over ten years since we lost our first child and feel now is the right time for us to try and speak openly about what my wife and I have been through, we realise that it’s something quite rare, but if it helps others, particularly other men who may struggle to deal with or talk about there experiences with any form of a non life sustainable birth defect, then it’s very much something we should try and do

 

[Barry Horne's Love Child]

That was tough, but heart-warming, to read, it must have been exponentially more so to write, so thanks for sharing. Great to see the club sorting you out too. Your story needs I wider audience I think, have you shared it with your SHINE group? One of my aunts also had problems with her early pregnancies. She had three miscarriages I believe, but now has 3 adult daughters and two young grand-daughters! I'm sure you'll be similarly blessed in the future

Thanks mate, yeah it took me a long time to get it all down in writing, I’d wanted to do it for years then had a night were I couldn’t sleep, got up and just made a start, but my first post up on my Facebook and had such an overwhelmingly positive response and spent the next week writing out a new post each night. Found it really helped getting it out in the open.
I posted all of this on our anencephaly support group and had been speaking to the charity directly about getting our story shared but everything has slowed down since the COVID lockdowns, hopefully when life gets back to normal we can make a start again.
Really sorry to hear what your auntie had been through, but glad to see it’s ultimately worked out for her ;-)
The club were brilliant to, literally couldn’t have done more, invited me in the ground for the pics I took and sent me out a player signed ball, and have done every year since just off the back of one email I sent out.

 

[Barry Horne's Love Child]

Thank you for sharing.

My wife and I have lost 5 pregnancies but now have our wonderful 3 month old daughter to hold. Your writing almost perfectly captured our emotions during that difficult time. The passing of the fetus at home on the toilet is etched into my brain.

I’m so sorry that you’ve had to go through something similar to my wife and I have, losing five pregnancies must have been such and incredibly difficult period to live through, I’m just so glad that you now have had a healthy daughter. I know before my first girl was born we went though an awful period where we felt that it may never work out for us, so I’m just so glad that you now both have your baby girl.
Really hoping that these posts can make it that small part easier for other men and dads to speak about what they’ve been through and realise that their not alone

 

[kstoffee]

I’m so sorry that you’ve had to go through something similar to my wife and I have, losing five pregnancies must have been such and incredibly difficult period to live through, I’m just so glad that you now have had a healthy daughter. I know before my first girl was born we went though an awful period where we felt that it may never work out for us, so I’m just so glad that you now both have your baby girl.
Really hoping that these posts can make it that small part easier for other men and dads to speak about what they’ve been through and realise that their not alone

You’ve actually encouraged me to speak out. I’ve been looking for opportunities here in the US for some side of pregnancy loss group to volunteer at ever since I read your post. That feeling of loneliness and shame is so real. You feel like you aren’t good enough or you’ve done something wrong, when in reality none of that is true.

 

[Barry Horne's Love Child]

I won`t lie mate, that had me in tears and brought back a lot of memories of when my youngest was born with an un - diagnosed permanent disability.

Through my voluntary work at Alder Hey, I referred quite a few parents to SHINE and it`s a truly inspirational charity.

Those posts to me show not only your tremendous inner strength, but also that of your missus and also the incredible strength of your relationship too.

The amount of couple who split up under circumstances such as yours is incredibly high and it`s usually the fella that walks away.

The fact that your`re a man and heavily involved with SHINE is tremendously important, as it`s the father that normally gets completely overlooked and all the support focus is on the mother. This is despite all the stats pointing to the father being the one to walk. Dad`s need to to talk to other Dads who know what they`re going through and just by supporting someone you can potentially keep a family together.

I`m sure you`ll agree with me mate, that ordinary people can do extraordinary things and you`re one of them - even it`s never crossed your mind.

" Fate up against your will, through the thick and thin "

Fully agree with everything that you’ve posted here mate.
firstly if just like to say how much I respect that you’ve been doing voluntary work with others though alder hey hospital. I’m sure that like me you’ve found it helpful on a personal level, and as for me being able to make some kind of a positive out of what otherwise could have become such a destructive or negative experience has in some way helped.

Again your right on just how much the supportive focus tends to be aimed towards the child’s mother, I think unfortunately that stems from the reality that women are much more receptive to sharing and talking about their feelings and accepting help, as a gender we tend to hide it all or lock it away, and I’m as guilty as anyone else for not following the advice I know I’d have given others in my position.

 

[Barry Horne's Love Child]

You’ve actually encouraged me to speak out. I’ve been looking for opportunities here in the US for some side of pregnancy loss group to volunteer at ever since I read your post. That feeling of loneliness and shame is so real. You feel like you aren’t good enough or you’ve done something wrong, when in reality none of that is true.

It’s a horrible feeling, I do believe that it’s something that men tend to suffer through privately. The reality is that in most cases there is not much that we can or could have done anything differently, I know that from my experience each loss brought a different emotion, the first was one of complete confusion and trying to understand a condition I’d never heard of before, the second was a massive anger and feeling of being cheated, the fact that I worked as nurse and felt like I’d done more good than bad in this world made me so angry, especially with what my wife had experienced through her life as a child, it just didn’t seem fair.
Our last loss was different as I felt it was in some way self inflicted, we’d knew the risks of becoming pregnant again and allowed this back into our lives again, at the time I absolutely hated myself for it and was on such a self destructive path of drinking as a coping mechanism that I’m sometimes still unsure how we kept our marriage intact.
I think it’s only with a later reflection that you reach a point were you find that it’s not your fault, is massively out of your control, and is something that life has unfairly thrown towards us.
It it would help, our anencephaly group is available via Facebook if you search for us. If you’d like to join send me a DM with your name and I’ll be able to accept you into our group without the usual application process our admin staff run. Even the best if your losses are not directly affected by a neural tube defect I think that having another male perspective and experience would help manly of our members and hopefully you and your partner.

 

[Barry Horne's Love Child]

Mate, I know it's for charity and stuff but 'blacking up' is frowned upon these days.
May I suggest you try something different going forward.
Good luck x

Ha, I knew this was coming when I was editing the picture ;-)

 

[CrustySack]

@Barry Horne's Love Child

That was a tough read fella. It's good that you can reflect and make sense of the last 10 years. It takes a lot of inner strength to go through what you and your good lady have gone through and to come out the other side intact. I'm sure it has made you both stronger people. I have nothing but admiration for both of you.

 

[Barry Horne's Love Child]

@Barry Horne's Love Child

That was a tough read fella. It's good that you can reflect and make sense of the last 10 years. It takes a lot of inner strength to go through what you and your good lady have gone through and to come out the other side intact. I'm sure it has made you both stronger people. I have nothing but admiration for both of you.

Thanks mate, it’s been rough but feel a lot stronger for being able to get through it all, feel that it’s time to help others that are in the position we found ourselves in the past.

 

[Yid4life]

Didn't know where to put this but she is one of your own.

 

[peteblue]

Life can be a right bitch. In another thread many in here opened up about losing a child in pregnancy, but nothing like what you and your wife went through. Good luck to you all for the future and hope that life begins to be kinder to you...