Hi everyone!

My beautiful and adorable son Jayden has congenital hydrocephalus and had a VP shunt inserted last week. Jayden is 8 months old and in the course of a week he has become the smiliest, and happiest baby. This gives me renewed hope for his continuing care.

I have a million questions about numerous things regarding hydro and i look forward to learning more about his condition.

We have two amazing girls aged 4 and 7 who adore their baby brother but i am concerned about the toll his hydro places on the whole family and how they might be feeling. If anyone has any advice about this it would be appreciated.

Thanks for listening,
Sarah

Welcome, Sarah!

I'm a 41 yo mom, dx'ed with hydro at 3 weeks old. I'll be happy to answer any questions I can for you. Please fire away.



LIZARD (big sis to Sarah, too! )

Dear Liz,

Thankyou for replying!

I already have a question..... sorry....

The tube that goes to his belly. The sutures have been removed and it has healed perfectly.... however there is a hard lump under the cut line. It doesnt bother him but it sticks up. It is probably about 2cm long and 1 cm wide. Any ideas??

The shunt has been in almost two weeks now and jayden is fine. I however am really aware of ppl staring at him. Dont get me wrong, i'm not going to stick him in a corner so no one can ever talk to him or look at him but it amazes me how much ppl stare. Some ppl ask what has happened, some ask if i dropped him or something ( because of the bandaid things on his head), and some just stare. I am really happy to explain his story and answer the questions. Jayden's head is largish with very little hair and the shunt is prominent at the moment. My GP convinced me to take the bandaid things off this morning so now the cut and suture lines are visible too. They are really well healed. Emily (7) was grossed out this afternoon. Hopefully some hair might grow soon!! Maybe Santa might bring some! lol

Sarah

P.S. i'm australian thats why i use cm's not sure how to convert it! sorry

So it's roughly 1-1 1/2."Is it red or warm to the touch? If not, he probably doesn't have an infection, but since it's hard, I would mention it to the nsg to be sure he's okay. Does it seem to bother him?

((((((((((HUGS)))))))))))) re the staring and nasty remarks. People are cruel and stupid! You don't owe them any explanations, but if you feel the need to say anything, a comeback to shut them up is a good thing...something to the effect of, "No...did your mother drop you on your head?? There must be a reason for your crassness and idiocy!" ( ) Once he does grow hair, no one will know, and it shouldn't be long. Does he have any cute hats? They will help keep prying eyes away, too.


LIZARD

a hat! The one "remedy" for a shunt replacement!

I also have somewhat of a "lump" in my abdomen where my shunt is, though it is soft and easily compressed. I personally think I have fluid collected in my abdomen, although this has never really been investigated. Unless Jayden is in pain, I would say it is nothing to worry about.

Just to reassure you - no one will notice any scars on Jayden's head once his head has grown. In fact, he will probably have more hair over the scar !

Nat.

Dear Nat,

Thankyou for replying to my post. It has been nearly two months since the operation and Jayden is doing beautifully. The lump in his abdomen is still sticking up but it causes no issues. The ns said it was the disolvable stitches and scar tissues. Thankyou for your reassurance though.

Sarah

I hope that everything will be fine for you and Jayden - for a LONG TIME !

Nat.

Hi sarah,

I havent been on here in ages so only seeing your post now. My daughter Orlaith was born with hydro and had her vp shunt inserted at 3 weeks. So any questions you may have from a different view (ie. from one mum of a child with hydro to another) please ask. may even have some for you at some time in the future.

i do worry about orlaith but she is such a happy baby, she is doing great and all her hair grew back within a couple of months. She has now grown into her head so to speak, she is 17 months now and has just started crawling (she also has low muscle tone) so is having a ball exploring the house on her own terms

Gillian

Welcome! I am new too and I am here for my grandmother!