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Original poster

death of my son due to williams syndrome

95 replies

gingegirl · 12/05/2011 23:05

i have been on here for a couple of months now as we were waiting for our ds to be diagnosed with a rare genetic disorder called williams syndrome.
our wonderful ds sadly past away on may 4 suddenly! we took him to bristol childrens hospital for a routine cardiac catheterisation to check all his coronary arteries. our beautiful ds sadly suffered 2 cardiac arrests during the test, he was then put on a life support machine. however he suffered a further 3 cardiac arrests whilst in intensive care.

doctors told us that an opperation was not viable and there was nothing that could be done to save him.

he was placed in our arms the machines were switched off and he past away peacefully in our arms.

i honestly dont know how we are going to cope now he has gone? my life was filled with appointments with him, salt,dietitian, physio,pead, cardiologist etc.....

he was such a happy little boy!!!!

is ayone out there going through the same thing????

some advice please!!!!

OP posts:
purplepidjin · 12/05/2011 23:07
nightcat · 12/05/2011 23:14

so very sorry :( :( :(

MrsDmamee · 12/05/2011 23:16

So sorry for the loss of your precious DS ..I dont have any advice.
He must have been (AND WILL ALWAYS BE) a brave little boy.

working9while5 · 12/05/2011 23:19

I'm so sorry for your loss. I'm not going through the same thing but I'm just so, so sad when I hear a child has died. It's just not fair or right.

As you mentioned wanting to connect with others in the same situation, there is a bereavement section on mumsnet and it has a "safe haven" thread for parents who have been bereaved here.

As they say in Ireland: ni bheith a leitheid ann aris (there will never be his like again). I wish you strength on your journey forward.

GoodDaysBadDays · 12/05/2011 23:20

Oh gingegirl I'm so sorry.

I have no advice for you as I cannot imagine what you are going through.

Would you like to tell us about your son? How old was he?

ghostofoldiespast · 12/05/2011 23:30

So sorry. My thoughts are with you xx

zen1 · 12/05/2011 23:30

So very sorry to read this. I remember you posting about your lovely little boy and particularly about his cheerful and happy personality. I can't offer any advice, but I wanted to say that I am thinking of you and your family.

Original poster
gingegirl · 12/05/2011 23:32

thank you!
he was 2 years old! there are pics on my profile page, he was beautiful!
we knew he had williams syndrome, and his development was affected by this, but outwardly he was a well boy!! we had no idea what was going on indide his heart!! which really annoys me seen as he has been under the cardiologist since birth!!!!

OP posts:
tabulahrasa · 12/05/2011 23:35

I have nothing to say really either, other than that I'm so sorry :(

BakeliteBelle · 12/05/2011 23:39

What a gorgeous boy he was - I am just so sorry and sad for you. Working is right, the bereavement section seems to be a really safe place where there are others going through the same. I remember a lady who posted in AIBU and said she found great solace on the bereavement threads. I am sure you will always find a home on here too. Once an SN mum, always an SN mum xx

GoodDaysBadDays · 12/05/2011 23:50

He was a beautiful little lad x

messmonster · 12/05/2011 23:56

I'm so so sorry GingeGirl. I cannot imagine the pain that you're going through. My DD has a rare chromosome disorder and I'd read your previous threads about your son and had sneaked a peek at his pictures. He was absolutely gorgeous. Words fail me in this situation but from one Mum to another, I'm sending you my sincerest sympathies and virtual support at this horrendous time for you. x

Al1son · 13/05/2011 00:00

I am so sorry to hear what happened to your beautiful boy. It must be a terrible shock.

I can't begin to imagine what you're going through and I wish I could give you some advice. I can't but I guess some people who have been through something similar on the bereavement threads will be able to do that. You must keep coming back here too though to share your memories and your experience with us.

You sound like a wonderful mum who did everything to make her little boy happy. He was lucky to have you and be part of the lovely family I can see in those photos.

I'm sorry you feel let down by the cardiologist. I hope you can find a way to resolve that at some point.

It's time for the three of you to take care of each other now.

wasuup3000 · 13/05/2011 00:12

So sorry :( :( :(

TheLadyEvenstar · 13/05/2011 00:16

So very sorry for your loss.
No words really Just so very sorry.
xxx Hugs xxx

working9while5 · 13/05/2011 00:24

Oh gingegirl, from your pics he's a gorgeous little boy full of happiness and mischief like any two year old. I am so sorry you don't have him with you, there are tears in my eyes for your loss.

FamilyCircus · 13/05/2011 00:36

I'm so very sorry for you and your family gingegirl.

Your DS looked such a beautiful, happy little boy.

xxx

someoneoutthere · 13/05/2011 05:20

So sorry gingegirl.

Ben10isthespawnofthedevil · 13/05/2011 06:06

Beautiful boy Sad

So sorry for your loss. It looks as though he had a wonderful happy life

x

IndigoBell · 13/05/2011 06:12

:(

Peaceflower · 13/05/2011 06:49
Sad
streakybacon · 13/05/2011 07:02

Very sorry for your loss.

Thoughts are with you Sad.

ohmeohmy · 13/05/2011 07:04

So sorry for your loss.

signandsmile · 13/05/2011 07:24

I am so sorry to hear your news. You and your family are in our thoughts. Sad

TheNinjaGooseIsOnAMission · 13/05/2011 07:58

gingegirl, I'm so sorry for your loss, he's gorgeous Sad