18 and my baby wont live past infancy

[Shauna678]

My name is Shauna i am 18yrs of age and i am seven months pregnant to a beautiful baby girl named Emily Marie, unfortunately i don't know how long i'll see her when she is born because she has fluid on her brain and nothing can be done. I only plucked up the courage less than 2 months ago to tell my parents that i was pregnant and at the time it never even crossed my mind that anything could be wrong because i didn't drink or do anything that could seriously harm my baby, i thought i was having a pretty normal pregnancy and i was due for a scan a week after telling my family because i went for so long without having one. My family was starting to come around to the idea that i was pregnant and when i got my scan i was so happy to hear that i was having a little baby girl. I was told by the first nurse that they didn't know how far i was gone so i had to come back in an hour and get another scan. I knew something wasn't right because she was going through so much fuss over my due date but i only realised the extent after my second scan. My heart broke in two when i heard the news that there was fliud on my baby's brain and that i had to be sent up to Dublin for feotal assement testing. About two weeks later i went up to Dublin and they told me that her brain is so badly damaged that there is nothing that can be done and asked me would i voulnteer to an amniotic fliud test, so i agreed, thinking and hoping that it would make a difference to the outcome or give me some indication to her life expectancy but it didn't. after i got the results to that test i was sent up to dublin yet again for a feotal mri but yet they still haven't given me any answers to my questions. All i wanted to know would she live for hours, days, weeks or months because then i could maybe start to accept it a bit better and know what i'm dealing with. They kept me in total darkness about alot of things icluding the fact that i could go into labour any day now which i was told by my doctor in Kilkenny. they wont tell me because they are afriad of being wrong and maybe being sued or something but i wouldn't do that i'm not like that.
Why is this happening to me?
Is this a way of god punishing me and if it is why isn't he taking it out me instead of my innocent baby girl?
Is it to make me a stronger person or is it just that she wasn't ready for this world yet?
I am being strong for her because she deserves the best last couple of months in the womb because atleast i know she is safe there and she is due on Christmas eve so i am going to make sure that she is happy and that she knows that she is loved. The only thing i am afraid of is whats going to happen to me after the inevitable happens?
Will i fall into a black hole that i can't get out of or will my soul die along with her?
All i want is her alive and healthy
and she is being taken away its not fair.

Really sorry to hear this Shauna. I hope that you are surrounded by people who can support you through the next few weeks and months and beyond. It is a really awful situation and the not knowing and the uncertainty must make it really hard for you. I am sure though, that it's nothing you have done. I am sure that it is not a punishment from God. There is no reason for this to happen , other than it sometimes does. You will feel that you are in a black hole, but you will get through it and, whilst it will be really tough and there will be times when you think you will never get through, you will in the end. I haven't experienced the same situation, but I have had three miscarriages and I thought I would never survive. As time went on, the need to know why these things happen diminish. Your last sentence is certainly true, it's not fair. I'm praying for you and your family......

Thank you so much for replying i'm trying to be strong and i believe in heaven too that is the only thing that is stopping me from going overboard altogether but sometimes its really hard to deal with. I hope i do meet her again, she will always be my little guardian angel.
It just really tests my faith sometimes.

Thank you for praying for me

So sorry to read this. I'm afraid I dont have any answers for you. Could you speak to the hospital chaplain, I'm sure they will have experience and advice.

Sending you and Emily Marie lots of love and strength.

I have no words apart from I am so sorry you are having to face this
I wish you strength and peace, x

Should add that I am sure God is not punishing you. It sounds that you are doing everything possible to keep your safe.

And no, it isnt fair

I'm so sorry for you Shauna. This is not your fault.
It sounds like your daughter is truly loved. I wish you strength to get through this.

No Shauna, it's not fair and it is not your fault at all. Sometimes such things happen and there is just no obvious answer as to why.

I can only begin to imagine how difficult it is that the medical profession can't give you further clarity but what you will experience with your daughter will transcend all and any of this when your 'outside' time together comes.

You are already together though, entwined in love, body and spirit and you can communicate with her now on a level which rarely exists beyond birth in any circumstances. Make the most of the unique closeness of pregnancy, try not to let these last precious weeks of this sacred state be taken from you by fears of whatever may come next, for your relationship and sharing of pregnancy is sacred in itself.

I don't think anyone can answer for you regarding how you will feel on her passing. You might feel that your soul has died but it wont have, it will need to heal and in that healing there will be learning and on the far side of it all, there will be a future.

Sometimes it might feel hard to find the light that draws us all forwards but it will be there. Reach out for a hand from those that you wish to support you and let them help you through.

You are brave and strong and I am in awe of you xx

It is not your fault, you poor dear.

My prayers are with you and I also think you are very brave.

Hi shauna i am so sorry you are having to go through this, life can certainly deal us some really cruel blows. I don't know if this will be of any help to you but a close friend of mine has a son called charlie. When she was pregnant she was told that her son had alot of fluid on the brain and would be brain damaged and would probably not survive past a few days. Well after he was born he was transfered to great ormand street hospital and they operated on him and placed a shunt in his head to drain the fluid away. The shunt runs from his head down to his bladder. He is now 12 years old and despite a few minor disabilities he is in main stream school and doing well. I know all cases are different and i don't want to give you false hope but if this helps you at all and its something you can maybe look into. I really hope and pray for you and believe your daughter will help you stay strong. Best wishes x

*shauna" i am so upset to hear what you are going through. it is a huge amount to cope with for anyone, especially so young.
i can't imagine the absolute trauma you must be experiencing, and i hope all your family rallies round you at this very difficult time. You sound really wise and lovely. I wonder if you could get some counselling? The hospital or your GP may be able to refer you. your story has helped me get my own situation in perspective, making me realise there are people coping with much harder things than i have faced. I know of a couple who lost their little girl when she was just a few days old. They are religious and they think that it happened to them because God knew they were stronger than some other people and could handle it better. I don't know about any of that - i think life's just terribly unfair - but you sound a strong person to me, even if you don't feel it.

Hi shauna, I am so sorry for what you are experiencing and the lack of help and understanding you have had so far..

First and foremost, this is not your fault and God is not punishing you for anything. You have to believe that and come to terms with the fact that these things happen and you are right, they just aren't fair. You cannot blame yourself for anything.

Which hospital did you attend in Dublin? Is there a chance that they are still conducting tests on the fluid from the amniocentesis? Do you have a contact there that you could ring and ask for clarification?

The foetal assessment unit I attended in Holles Street had several points of contact I could ring including the consultant who did the testing. Could you be referred to the genetic counsellor? There is one in Temple Street and in Crumlin - they are very good at talking to you about the tests that you have had and what the results mean for both you and your baby.

If they have done an MRI and mentioned brain damage to you, did you have a chance to see a neurologist or one of the counsellors/nurses connected to their team?

I'm sorry for all of the questions, I'm just trying to see if there are any other avenues you could try to get the support and information you need.

Take care and try to stay strong xx

Shauna -
I'd encourage you to make the most of whatever short time you have with your daughter. Take photos of yourself with a bump, sing special songs to her that you can remember once she's gone. Even see if you could record the sound of her heart beat.
We lost a daughter shortly after she was born, having known that it would happen. The pain of losing her was at times almost unbearable, but we have never regretted the fact that we enjoyed every moment we shared with her. Memories are so few, so you need to make as many as you can.

I've got a feeling that the SANDS forum isn't operating at the moment - but google the website and have a see - there is a section on their for people who are impending loss.

Dear Emily - what a precious girl, and how blessed to have a mother who loves her so much. Our daughter was born a month early - and they said that's often the case with babies who have some sort of problems.

Take care

Dear Shauna

This is nothing to do with you or what you've done at all.

When I was 21 I had a baby girl who had Turner's Syndrome and she lived for a month and a day.

It was the most bloody awful time but I got through it with the help of friends and family and talking about her whenever I needed to.

She would have been 15 this year.

I now have 3 healthy children. I was told that what happened was a 1 in 5000 chance.

I'm thinking of you. xxx

Dear Shauna, I am desperately sorry to hear this. I wish you strength and comfort and send you all my love and prayers. May God bless you and your precious baby girl.