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Any viral encephalitis mums out there? Help needed, please.

(6 Posts)
FS1984 Thu 28-Apr-16 13:08:18

Hi there, my beautiful little sister has recently given birth to a beautiful yet irreversibly brain damaged baby, who consultants and specialists believe caught viral encephalitis right before she was born. Luckily my sister is physically healthy and was not affected or this story would be even worse.

There is very little support out there for my sister and her husband, so I was hoping that by posting this I might be able to track down someone who is going / has gone through a similar situation, even if not the same.

My gorgeous niece looks perfect from the outside, but inside is very damaged. The extent of which isn't completely yet known. The one thing that is known for definite is that she will never live the life of a 'normal' child. This isn't a mild disability. This isn't a 'one day she'll live 'independently' (with copious amounts of help).This is mental disability in the extreme that will affect everything about her. There is no chance for her to get better and it looks like it is a waiting game for who knows how long. She may never be able to sit up, she may never be able to eat unless form a tube. Every day is a new day and a new challenge for my sister. It certainly isn't the motherhood she had planned. Or that any mother plans.

I would love to find a parent who knows what this feels like, who could be a faceless sounding board for when my sister needs an outlet. I am of course here for her through everything, but we live in different countries and although I too am affected by this, it is minuscule in comparison and I will never truly understand because it is not my child. I only have a dog, and I can't imagine how we'd feel if anything happened to him, let alone a child of ours!

Can anyone out there help? There are no proper support groups out there (and I also don't know if she is ready for this yet) and I just think another similar mum would be able to soothe and make her laugh.

I'm not looking for prayers for the baby - the outcome is set. I'm looking for someone who can lend an ear, share a laugh, reassure her that life is still worth living and to not give up. I'm looking for someone who realistic and isn't just going to say 'there there'.

If you are out there, please do reply and get in touch. I cannot sit by and lose my sister to this tragedy. She is already so brave. I need her to know that she isn't the only person out there experiencing this. I'm getting married in 4 weeks and my sister can obviously no longer come which has added yet more sadness to all in this sorry situation. Coupled with my long working hours it means that I cannot be there all the time, even thought I want to be.

Many thanks in advance.

SandunesAndRainclouds Thu 28-Apr-16 13:20:17

No direct experience, other than understanding the desperation of finding another parent with the same / similar situation, so hopefully this is a helpful bump into active convos for you.

flowers

FS1984 Thu 28-Apr-16 13:33:03

Thank you so much.

PotOfYoghurt Thu 28-Apr-16 13:57:00

Bumping for you, and I just wanted to say that you're a very kind and thoughtful sister. You may not be able to be there with her but you are helping her. She's lucky to have you to support her.

FS1984 Fri 13-May-16 13:48:27

Thank you! We are trying our best.

TheEncephalitisSociety Mon 16-May-16 10:19:12

Hello,

I came across your post through a Google alert. I would suggest that your sister, if she hasn't done already, gets in touch with our support line - support@encephalitis.info - or +44(0)1653 699599. The support team can offer advice and literature (free) which can tell your sister more about encephalitis and the wider support that is out there.
We also have quite an active Facebook page which may be of interest.. www.facebook.com/EncephalitisSociety/ ... We share stories of others who have been affected by encephalitis, or who have children affected by encephalitis. I believe it could be useful for your sister and she could make a connection with others in a similar situation. I hope this helps... but if you have any more questions, then please get in touch.
Best wishes, The Encephalitis Society.

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