Wolfe parkinson white !!!

[babywishes1]

My daughter has been diagnosed with this heart condition and i'm looking for a buddy whos child has the same problem.

 

[Aidedhoney]

Hello,

My son ALex was born with a heart defect.
While its not Wolfe parkinson white he has i understand the implications of having a child with a heart defect.
He is post op for truncus arteriosus.

x

 

[babywishes1]

Sorry to hear about your little boy , It's hard isn't ? I'm at the stage where i feel like i'm to blame .

Angel is 8yrs old and we have been lucky to find it as it's related to sudden death but it's safer now she's on beta blockers.

When is you little one due for the operation ?

 

[Aidedhoney]

Honey in no way are you to blame, these things happen, nothing we could have done would have stopped this happening.
I can understand the emotions that you and your family will be feeling its a bit like been on a roller coaster, so many ups and downs.
Its very hard but with the correct support you can get through this.

I did google WPW must be very scary for you and your family? How is Angel coping? Is she aware that she has a problem? Have they said if they will operate?

Alex has had his first surgery, he had his first op when he was 2 weeks old, he will need at least another 2 perhaps even 3 over the next 8 to 20 years.
The link at the bottom of my sig explains about Alex and his surgery.

Have you been put in touch with any support groups?

Jx

 

[babywishes1]

She's not really aware and this is how I like it! , She needs her childhood so I'm trying to carry on but I feel like I'm falling apart inside.

I dont have anyone to turn to really cos my family dont understand how I feel and I'm seperated from her Dad but he takes everything day by day anyway.

Did the hospital put you in touch with support groups?

 

[Aidedhoney]

Families eh, they never seem to really understand, my mum would have Alex wrapped in cotton wool and his dad would have him bungee jumping. It like 2 different extremes.

I agree that its important to let Angel have her childhood, it would be very easy to confuse her with too much information.

We are under the care of Yorkhill Childrens Hospital and ermmm no they didnt put us in touch with anyone. We do have a cardiac Liason nurse that we can get in touch with if we have any questions. Which is a bit of a poor show really.
My local GPs are good but because we stay rural they seem to be a bit scared of Alex and any questions i have are always left unanswered.

I am in the process of trying to find a support group, i am led to believe that there is one aimed at children (will Pm you the details)

 

[babywishes1]

yesterday I have received a letter from mthe hospital to say she now has supraventricular tachycardia (SVT ) as well and this is what i was worried about as she has the extra pass way and makes the WPW worst as risk of heart attack or sudden death.


I have woken 3 times in the night dreaming that i couldnt finkd her think it just my was of coping with the situation .


Men hey!!!! bungee jumping .... I know my ex lets the kids do what they want .

We are at Birmingham and they are good and fast we have rural doctors and when i told them what she had he had to look it up in a book whils I was sat there !!!! good eh!!!

 

[Aidedhoney]

Wow scary stuff, must be very scary, have they said how they will treat this?

The support group i have found is www.youngheart.info as far as i am aware they have branches nationwide.

 

[Aidedhoney]

Heartchild.info is also another good group for advice and easy explanations

 

[Aidedhoney]

The rural doctors is a bit crap, its very frustrating that as a parent i know more about my sons heart defect than a so called medical person.
I get fed up of going over and over all the info, i try and see the same doctor all the time to save me doing this but its not always possible x

 

[2bmum]

I've just seen this. Sorry to hear about your little girl. It's hard to cope with isn't it. Especially when you have so many specialists and people giving you information.

My little boy has sluggish valves and thickening of the chamber walls. Ontop of this he has just been diagnosed as having a murmur. He also has a lung problem and a tissue disorder which is linked to the thickening of his chamber walls.

Oliver goes to Birmingham too and sees Dr Stumper and I am just waiting for his first appointment to see a genetisist in Brum too.

I agree about the rural doctors and many a time I've taken Oliver to the docs and they've reached for medical books.

I would like it so that Oliver didn't have to know and could lead a relatively normal childhood but because he has problems breathing and his valves don't open properly he will have to rest and isn't allowed to do any strenuous sport and have been told he won't beable to do athletics, football or anything like that at school so it will be obvious to him that he's different.

You do blame yourself, even though I've been assure that it's just one of those things and that the heart is such a complex muscle, things do sometimes go wrong when it is forming, you can't help but blame yourself. As a mother your job is to bring your baby into this world and when you do and there is a problem you feel responsible. Or as I said when I was sobbing in neonatal - I broke my baby.

If you ever want to chat please feel free to pm me, aidedhoney and I chat via pm. I know it helps me to off load some of the worries with someone who is going through a similar situation.


Hugs to your special girl x