Will's hospital results.

[MsNat]

I feel like my head is about to explode.

The consultants we have seen today agree that Will is showing all the signs of having occult spinal dysraphism (which is a type of mild spina bifida but with additional problems.) The type of spina bifida on it's own is quite common and may or may not cause problems later on in life but Will is one of the 2 - 3 % of sufferers who have these additional complications.

The only way that we will know for 100% certain is to give him an MRI scan but we feel he's to young for this at the moment so have put that on hold. He has all the outward symptoms anyway (like the patch of hair, the dimple, and the off-centre line on his back).

He also had some x-rays taken which show weaknesses and a missing vertebrae in his back. There was also something else showing up which they assume are cysts but he's going back to have some more tests soon.

In short there is not much else that they could do for us today, we just have to wait and see what happens and deal with the complications as and how they show themselves.

At the moment, Will is doing well. He's standing and trying to take a few steps. It's only when you look at his back that you notice something different. His right leg is slightly longer than his left leg but again we have to see how this works out. We do have a few other concerns about him but again they will become more apparent as he gets older.

So, we are looking at :

Possible and /or incressing loss of sensation in the legs
Bowel and bladder problems - probable double incontinence.
Curvature of the spine
Severe back pain.

The main worry though is what will happen during and after puberty as the growth spurt can result in a number of problems such as :

Increased weakness or loss of muscle function
Increased muscle tone
and Deterioration in walking ability.

This is down the spinal cord getting stuck or somthing and will require an operation on the spinal cord.

So for now at least, we are o.k. Will will need monitoring and will need to be re-assessed in great detail before he starts school as there could be potential problams with him playing sports and the incontinence things.

We have to do everything we can to avoid a back injury and they have recommended physio to strengthen his legs and lower back whoch we are going to look into.

They have also advised me that it would be best to seek genetic counselling beforehand if I decided to consider having any more children.

Sorry for the mammoth and very factual post (I've copied half of it from the fact sheets that they gave me ).

So that's that, I don't even want to think about the emotional side of things for the moment. Worse things can happen but .

[applepie]

dont know what to say to comfort you

[Blonde Girl]

Oh Nat honey, I really really don't know what to say. I think you are being incredibly strong and I have the utmost respect for you.

Huge huge hugs to you and all your family.

xxxxxxx

[Nat]

Oh honey I'm so sorry , I really dont know what to say, its a HUGE amount of info etc to take on board, as you say, without even thinking about it from an emotional point of view. I am guessing it is going to take a while to sink in and then start to come to terms with. I am so sorry darling, We are all here for you darling.
Massive hugs to you all. xxxxxxxxxxxxx

[August Girl]

Ms Nat. It must be a lot to take in.

[Minky]

Oh Nat. I hope and pray for you that he will be the one who comes through it all strongly and with the least complications possible.



xxx

[BJMac]

MsNat, I'm so sorry that you're going through this

Thinking of you

Sorry for brief reply but laptop playing up

[sparkliness]

[Our lass]

Gosh, what a lot to deal with. Big hugs to you and your family.

[spritzer]

I don't know what to say apart from I guess only time will tell the extent of the condition and how it will affect him.

He's still your honey little boy and give him a big cuddle from his damzing aunties

[DillyDally]

MsNat

[Lois Lane]

[Cathcot]

Ms Nat

My heart goes out to you, I am so sorry that you are going through something like this. Have they given you an indication of what percentage of sufferers experience the things that you have mentioned? If not it might be worth asking as you may be worrying unnecessarily on the other hand if there is a strong possiblity then at least you can try (though totally appreciate that it is going to be be much easier to say than do!) to prepare yourself.

Big at this awful time for you.

[goldilocks]

No wonder you feel like your heads about to explode. You're being so strong and I really admire you for it.

take care sweetie

Goldi
xx

[tinkerbell]

oh nat i hope they can sort everything out for him. what does the hairy bit and dimple look like as i'm worried after reading this because alice has a really hairy patch and a dimple at the bottom of her back

[Damsella]

Oh MsNat, huge to you

You sound pretty shellshocked. I expect that as it all sinks in you will have some pretty wobbly times, and we will all be here for you then

[Miss P]

Ms Nat

Just wanted to add my support for you and your family There seems so info much to take in and so many "what if's" that my heart goes out to you.

It sounds as though you're coping incredibly well so here's to continued strength for you. Keep us posted.

[Julesb]

Thinking of you!

[shining star]

Oh Nat it all sounds absolutely heartbreaking You sound like you're being so strong though.

If you ever need to let it all out and rant and rave, you know where we are

ss
xx

[Cailín Deas]

What a lot to cope with.

I can't say anything to help except that in common with everyone here, I'm willing on you and your little boy well.

Try to take care of yourself too.