AND SHOUTBOX!

 

 

I have a question that has been on my mind for months.
Ii would like you to ask other parents of chd kids.
My beautiful miracle grandson Callum ( you know him ) has chd and shones.
No one new Callum was ill before birth as the hospital did not do a twenty week scan. I thought this was common practice.
His family never got the time to prepare for his condition and more importantly he was born at home and left to struggle until his cardiac collapse.
I still find this practice so bad. How many other babies are born at home, who should be in hospital with a team of experts standing by.
Thank god Callum survived..
However it really worries me that other ill children are being failed in such a way.
Do all hospitals have to provide 20 week scans. If not , should they be permitting babies to be born at home with no knowledge of their health.
I worry that another child would struggle like Callum did after birth. It could have ended so tragically .
Keep up the good work and god bless little Tristan.

Love Callums nana lorraine in australia

 

 

Once your child has been told they can go home many parents feel isolated, alone, terrified, Some even explain having feelings of anxiety and depression, this is due to staying so strong and holding in many emotions for your child some say being brave, keeping a strong front hoping our special kids dont pick it up and so on......

 

                                                                                             

When at home we feel that we have been forgotton things go from being madness in hospital to the calm of home and no docs or nurses to be seen and follow-up appiontments slow down, It is only then can parents deal with thier emotions and i strongly belive that with almost 95% of parents to chd babies and children, suffer post truamatic stress disorder (PTSD)

So the question im asking mums and dads is do you think we would benefit from some kind of after hospital counciling???

                                                                                        

We find it very difficult coming to terms with getting used to medications, the daily worries of infections, the what if's??.......... and so on.

I definatly think there should be more support for the parents, there is quite a bit of aftercare for our children which are the  number one priority but i feel that most parents including myself need from time to time somebody to just listen to how we are feeling to help us combat the bad feelings and turn them into good it helps anyone just to get things off their chest.

What are your thoughts?? plese fill out the form at the bottom of this page :-)

 

 

 

Whats in the press recently...

In this section of the site I want to hold debates on what is in the media reguarding HLHS/CHD.
Recently I found this article which annoyed me to the point where I had to express my own opinion,tell me your thoughts by using the contact us form and I will be more than happy to put your opinions on here.

This quote was taken form the British Heart Foundation:

Congenital heart defects are present in about 1% of live births and are the result of development problems during pregnancy, sometimes as a result of a viral infection such as rubella contracted by the mother. Alcohol, illegal drugs and over the counter medicines can also cause defects."

I couldnt help but get angry at this quote I mean I never drank, smoked, did drugs, or had any viral infection as well as many other parents that I have spoken to that didn't.  So, why on earth are we having CHD babies???
If we are not doing any of the above, then why??
It's simple for the doctors and scientists to blame it all on the parents just because they don't have the time nor the patience to research CHD fully.
In most CHD cases there is NO KNOWN CAUSE FOR CHD it's ridiculous to assume, that we as parents are responsible for our babies being born with a birth defect. As parents if there was a way we could prevent CHD then we would do everything in our power to prevent it,
I say that we need alot more research before the profesionals come to these conclusions.
The next quote says the opposite and that we NEED MORE RESEARCH!!!!

To back up my argument here's a quote from the Stanford Children's Hospital