Bereavement and Counselling

I have now ordered the certificate for my aunt Fanny (known as Daisy for some reason) as well. She's the only child in the near family known to have died early and I would like to know what she died of anyway.

This condition came down in the family from somewhere!

Morning.
Counselor has been and I feel exhausted. Most importantly talked about the baby I lost in 1967....which I haven't spoken about in a long time. Upsetting still.

I've just gone straight on to order a copy of his death certificate. It's just possible I may learn something from it.

I've ordered death certificates before but they have now made it very easy online........I may also order one for my baby aunt who died in 1911 or so ...since this disorder is a familial thing and I don't know how she died.

Goodnight all, going to bed early!

I talked for about half an hour to a really nice woman with a Northern accent....some help tonight.

....and I do have counselling tomorrow thank goodness - this has really knocked me sideways today.

Thanks folks

I am now trying to get through to the Child Death Helpline, but it's busy....want to talk.....

I am making a file with a collection of links to places where I may post stuff about it
- that's when I found the 'Can also present in utero with resulting prematurity or polyhydramnios.'

I still have to work out what to say.

It sounds as though there needs to be more information available to those with this syndrome so that they are given the opportunity to make the right decisions. I hope that your researches will play their part in making this happen.

Said I was in shock, didn't I. It took me 40 minutes to realise that Jayne might have been warned.
Except that - I was only looking today because she died.........

AlieO you must have such mixed emotions about the discovery. Yes, it supplied an explanation, which may offer some comfort that a mystery has been solved, but, on the other hand, the late timing of it must cut you to the quick. Try not to dwell on it (easy for me to say, I know)

We are thinking of you even when we don't post.

If Jayne had known that her brother died of it, she would have been warned that it could happen...

Good to hear from you Alie. I've not posted for a while but think about you often and especially when you haven't posted much. Take care

This one doesn't feel traumatic....it's an explanation after years of not knowing.....!

Thanks for responses everyone

Please protect yourself Alie. Delving into the past [even when there is nothing traumatic there is incredibly mentally/physically draining]. Look after yourself m'dear. I'll be away for a couple of weeks but still thinking of you.

In some ways it's good to know. But I do feel slightly in shock.

Only in 2001 when Jayne was diagnosed, did we know about the recessive gene - and we found out very little about Gitelmans then.

There is a lot more online now, but only on the info for doctors is there any real warning of the possibility of sudden death.

For patients, only vague warnings of heart trouble.

That is an interesting and upsetting finding Alie - let us hope that now the condition is known, other mothers could be spared this tragedy - is there any sort of group or organisation associated with the syndrome? You must be so desperate to spare others what you have been going through.

You are not forgotten, and much though of.

Alie it is good to hear from you in the midst of everything you are dealing with, and I am glad that you've got a listening ear with your counsellor.

A recently widowed friend said that grief can ambush you unexpectedly - very true. ((Hugs))

...might be useful...

How sad AliO, it must bring back so many memories for you.

Like others I think of you often and I admire the way you are supporting others who are sharing your grief.

Did you know that you had or carried Gitleman's syndrome when you were younger? It seems to me that you are doing valuable research into this awful disease and I hope that I tight be useful in preventing similar tragedies.

Thank you.

I have just made a serious discovery.
I was looking online for places to put in a warning about taking your potassium pills if you have Gitelman's syndrome - the condition my daughter died of because she apparently wasn't looking after herself.............

And I found this about the syndrome 'Can also present in utero with resulting prematurity or polyhydramnios.'
I lost a baby in 1967 just after birth, and I had this, it's too much fluid around the baby. so much so that he was induced 12 days early.
I know they tested for possible rhesus complications, no result; but they will not have tested for low potassium, not then.
Now it looks like I know why this baby died. Same parents.

It is not "out of sight ,out of mind" Alie sometimes we find ourselves just responding to your posts. I hope things are still a tad positive for you and K and your counselling is still helping you.

Sending love Allie, that's good news about the custody issue, it must be such a relief to you K and KN x

Don't forget me when I can't post....

Very sad about your friend dorset - good friends are so precious.

Alie - I am glad that you and K are able to share your grief.

Oh,I am so sorry about your friend, dorset.....people are so fragile, and we don't realise it....
(Think I said that before, but it will bear repeating.)

I have J's last mother's day card to me up with the other cards, because it says 'Love this Mother's Day and always'. Is this a consolation? Not sure.

I went to Oxford and have spent half the day trying to say the right things to K and KN....I just phoned K and he was going to have a nap while the baby did, ....maybe some of what I said went in.
He is being very angry and bitter about the whole situation, but he did talk to me - and I had a cry on his shoulder, and a big hug....he and I understand the same sort of loss

Last October my dearest friend died . We met thirty years ago when I returned to the UK following the divorce with my husband. She was also a single mum and we just fell into each other's company. We liked so many similar things, real book worms and at the time we both hated Mrs.Thatcher �� We went on holidays, a memorable one in New York, where I'd lived and she took me to Italy . Our backgrounds were so different , she hadn't had half the chances in life that I had, had. She was self taught virtually. One of the least selfish people I'd ever met. She became ill very suddenly and within three weeks she had died. I am totally bereft without her, I miss her so much. I hadn't realised how much life we had covered as I keep saying 'Carol and I ....' I was out to lunch with a mutual friend talking about her. I suddenly burst into tears and so did she , much to the interest or other diners. I think I will mourn her forever I just hope it'll be easier.