06/07/11 after an awful labour this is the day I gave birth to a beautiful little girl. I was induced due to growth problems, as I held her in my arms I noticed her head was quite severely misshaped. The midwife put it down to pressure from the birth canal, I agreed, she was taken from my arms to be checked over we were told we had to stay in for a bit as her temperature was really low.
All wrapped up and snug in her little bed next to me I couldn’t believe she was finally here, a midwife came in checked her over and we were finally allowed to go home.
A couple of days later the health visitor came to do routine checks, during the hearing test it came up unclear response on both ears, we didn’t panic though, as she said it was quite common.
Two days later she came back, yet again unclear response, she told us not to worry but it kept playing over and over in my head, we were sent to the hospital for a more in depth test. Three hours later the audiologist said the words ‘its bad news, your daughter has a hearing impairment’.
For the next 15 minutes I knew he was talking but I couldn’t take it all in, it was like I just zoned out.
He took some moulds of her ears and said she needed hearing aids, she got little pink ones so cute. She had them fitted and she screamed, my heart ached for her, she must of got the shock of her life suddenly hearing all these noises.
Her dad and I split up, he couldn’t cope with it all.
A month passed and I couldn’t help but notice her head shape was getting worse not better.
The doctors and health visitor said they would keep an eye on it, routinely checking HC. When she was about 3 and half months old she was sat in her baby bouncer and made an awful sound, like she was choking.
I leaped up to see she was OK and blood was pouring out her mouth.
I took her to the hospital where she was kept overnight. The next day she had blood tests, x-rays and an ultrasound on her head, nothing alarming was showing so we were sent home.
Two weeks later I received a letter saying her bloods showed she had vitamin D deficiency (explains why she never kept milk down) and an undergrowth of the sphernal wing of skull hence the misshape of her head. This was all too much to take in; she was just over 4 months old and didn’t deserve all this.
I broke down my poor baby, at 6 months she had an appointment to see the pediatrician I dreaded it walked in thinking what news we going to get today, as soon as I walked in I could tell by his face I wasn’t going to like what I was going to hear ‘ we think your daughter may have Neurofibromatosis type 2.
My daughter has Neurofibromatosis? What the hell was that?
This meant nothing to me but a word, then he explained how little tumours grow on the nerves, his precise words’ it’s like an electric wire, the wires are protected by a plastic coating, your nerves are the wires and on the plastic coating little tumours grow its very rare that they are cancerous but they can cause a few problems’ yet again.
I shut off, she is now 9 months old and is waiting to hear if she needs cochlear implants and waiting for an MRI in Newcastle to see if she has any tumours grown on her inner ear that may of caused the hearing loss and also to see if her skull has fused incorrectly, she is a truly an amazing little girl, you wouldn’t think there was anything wrong with her, I just hope that she can have some good news soon.
This inspirational post was written anonymously by a mum who is a member of my Facebook mums group. I have full permission to share her story. If you can relate to this post and would like to share your own anonymous post please contact me. You could help us share the blogs love to helping others by sharing via the social sharing buttons.
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aww bless u hunni u r so brave n strong to go through this ,i hope u get the good news u so need , n wat a brave lil girl u have my heart goes out to u , massive big hugs xx
Thanks for sharing your story hun your so strong to go thru this so is your lo. Hope its good news x x
hope you get the good news you need. your daughter is a brave little soul x
When you hear of someone’s lo being poorly – in any shape or form – it reminds us how lucky we are when ours are not. It’s hard being a single mum anyways without having additional worries. Hope that your daughter gets the treatment she needs and soon and that you have got fantastic support around you x
A very inspirational story of a very brave mum and an incredibly brave and lucky little girl to have a mum so strong. Big hugs x
i hope u get good news huni what a brave little girl and mommy for going through so much already. your very brave for sharing with us all the best for the future for you both xx
thanks for sharing ur story hun
i knew when my lo got his test results back that it was bad news i just didnt wanna hear it so i walked out of the room was hard but now i dont care who knows if people ask i tell them
Hope you get some good news soon hunni x x
Poor little girl. Just remember children are fighters! Hope you get some good news your way soon xx
hope you both get some good news soon, your both very brave xx
bless u. Id never heard of this before reading this post. X
I never heard of anything like this b4 but ur a truly inspirational mum hope everything goes well for u and ur daughter in the future hun xx
no matter what happens you have shown your strength and the love for your beautiful daughter. *hugs*