Anyone know of a support group for loss of babies from genetic cause?

(10 Posts)
bluebear Tue 24-Aug-04 23:11:28

A friend of a friend has recently lost her second baby due to a rare genetic condition that both she and her partner carry..understandably they are grieving for their babies but they would really like to talk to other couples that are/have been in the same situation.
I have a vague remembrance of someone mentioning a suppport group for rare syndromes, anyone any information???

OP’s posts: |
tamum Tue 24-Aug-04 23:13:52

The Genetic Interest Group might be a place to start. Do they have a name for the condition?

bluebear Tue 24-Aug-04 23:21:38

Note that I know of, sounds autosomal recessive..and unlikely to be something there's a test for.
Thanks tamum

OP’s posts: |
bluebear Tue 24-Aug-04 23:27:24

Think the one I was thinking of was SWAN (syndromes without a name) but they seem to be more for syndromes which are non-lethal at the neonate stage.

It's most likely the babies had a metabolic problem.

Anyone any ideas?

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JanH Tue 24-Aug-04 23:34:18

support groups genetic ?

Has links...but without a name would be hard I suppose.

You mean it's happened twice, bluebear? How awful for them.

bluebear Tue 24-Aug-04 23:38:03

Yes Janh, both babies born then terrible..the theoretical chance of this happening is 25% for every pregnancy but I can only imagine how hard it must be to go through a pregnancy wondering if it's going to happen again.
Thanks for the link.

OP’s posts: |
bluebear Thu 26-Aug-04 19:51:10


OP’s posts: |
SueW Thu 26-Aug-04 20:57:15

They could try the NCT's SPecial Experience Register - call 0870 4448707 for more info - or I can post your question onto one of the NCT's lists, if that's ok.

Or try here

or Child Bereavement Trust

or Child Death Helpline

or The Compassionate Friends

all of whom may have contacts for the parents concerned.

bluebear Thu 26-Aug-04 22:38:53

Thanks Sue, I'll pass the links on.

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tamum Thu 26-Aug-04 22:44:50

I've thought of another one, though they may already have come across it. It's Contact a Family . They say they have about 1000 AR conditions on their books already, although as Janh says without a name it will be hard to get specific support. Wish them luck.

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