hi im new to this and am looking for some help and advice .
i have a 4 week old daughter who was born with spina bifida she has now developed hyrocephalus but the docs dont realy want to opperate till she about 6 months old . we r going on holiday to florida in december for 4 weeks and the docs have all said its ok to take her with us (not that i could leave her ) anyway we went to see her urology dr the other day and we r being taught how to cathiterise her next week , but the dr was telling us we were being selfish and that we are bad parents for taking her away and that we were only thinking of our other kids and not rebecca . this has realy upset me and my hubby as all the other docs have said it is fine to go ..
i was just wandering if anyone one else has taken a baby or child away abroad with hyrocephalus and wheather the flight will effect her any ..
also does anyone else think the same way as this dr r we being selfish and bad parents for taking her on holiday ..with what we have been through in thease past 4 weeks we realy deserve this holiday i think ....
i would love to here ur oppinions thanxxxx
hayley mum to
katie 13
aidan12
elley7
charlie2
rebecca 4 weeks

Where do I start?
One big, warm, tight, hug, handshake and howdy, moose-size official type welcome to the site. This place is amazing!

I'm sorry you have to cope with ignorrant and arrogant doctors on top of your daughter needing help. -I don't care for docs and I'll tell ya story later on how I don't hesitate to put one in check.

I can humble myself enough to accept advice on parenting. (Single Dad to two wonderful little boys.) But I don't tolerate attacks. And it seems this is the course your egghead doc took.

Politely remind him you and your daughter need his medical advice and help.
And nothing more than that.

If possible, go shopping. And then shop for a different doctor.

OK. Got that off my chest...
Now, I'm not that familiar with some of the terms you used about your daughter's health, but I know we have members here who are.

You are not alone.
You are one of us.
And we are here to help.

thanx hun
my hubby had a big argument with the doctor and he did call him a few names i dont wish to repeat lol
we had a chat with our health visitor and have requested tyhat we see another dr
xxxxxxxxxx

First I'd like to say God bless you for loving your daughter the way you do. As a parent, myself with children with health issues since in utero I can empathize with you greatly! I have spent many holidays and special events in isolation with my children, due to their health issues and/or behavioral issues due to their ill health. I am wishing the very best for you and yours and your daughter, as my kids have, will learn to overcome so much with time as mine have. Kids are the smartest ones .

Hi, I'm sorry to here about what you guys and the rest of your family is going through, especially Rebecca. I'm not a doctor! However I did have hydrcephalus and under went shunt surgery about 2 and a half years ago. I've had 4 surgeries to date, no regreets, because I beleive it save my life.
After a two plus years of having my surgery I still didn't feel good about flying. It wasn't until my grandmother past away a few months ago and I had to fly to make the funeral. It turned out to be one of the nicest flights I ever had. After 18 years in the Army thats saying alot. Your child can't tell you how she's feeling so as the parents get the best medical advice you can get and if the trip is truely necessary make a decision based on that professional advice and in the best interest of your child Rebecca. You depend partly on the advice of others she depends 100% on you! God is always there for guidance beleive it or not. May God Bless You and Your family.Thomas

P.S. I just join the sight, sorry if the trip is old news and if so I hope that everything went well.

hi,
Godbless you and you family,

i knew to this too.

i have a 12yr who was born with Dandy Walker Malformation and at 7mths old had VP shunt inserted for hydrocepalus. i have never flown, just a quick trip on a helecopter when she was not so good. But all the docs that we have come into contact with over the years have all said she can fly there is no reason why she can't.

Only her mum knows what's best for her and your family. She will love it you watch. Not all docs know what they are talking about but mums and dads and caregivers do, they know there child the BEST.

You and you hubby both know down deep in your hearts that going away as a family is the best thing to do. Try not to let words get in the way of good parenting, be strong.

Listen to your heart.
lets us know how it went when you get back.

This was posted in November of 2008, and she has only posted twice. ONce to say she was upset, and the other to update.

I hope that all went well with her holiday, and her childs surgeries, and the drama surrounding the medical care she was getting.

Lets hope she pops back in at some point to update us, but its been 6 months, she may not.