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I need some of that fantastic MN support tonight...

59 replies

chicagomum · 29/01/2006 19:37

I have found out today that my sister who is 23 weeks pregnant, has been told that the baby has a cyst on its kidney (which could be a marker down's syndrome) and it may mean that the kidneys won't function outside of the womb. If this is the case she will have to consider a termination. She had a miscarriage last year, and has been trying for this baby for soo long, my heart is just breaking for her and BIL.

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VeniVidiVickiQV · 29/01/2006 22:09

Please do CM xxx

VeniVidiVickiQV · 30/01/2006 16:13

I hope everything went as well as possible for your sis today CM.
x

Hausfrau · 30/01/2006 16:15

This reply has been deleted

Message withdrawn at poster's request.

chicagomum · 30/01/2006 19:48

Tried phoning this evening after work but no reply. Don't want to push it iyswim, so have emailed her that I'm around if she wants to talk.

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chicagomum · 31/01/2006 18:08

Update. The amnio results will be back on Thursday, will confirm Down's and some other possible chromasomal (?sp) problems. There is a cyst on one of the kidneys but both kidneys are enlarged. Apparently there is no way of tellingif that means that they can't function outside of the womb until after the birth. I'm about to start a thread (and would appreciate if people can bump even if they have no imformation) as I want to see if I can find out more info and possible where she could go to seee specialists etc.

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fastasleep · 31/01/2006 18:20

My son had the kidney enlargement shown on his scans, but no cysts.... he had a very bad case, and was induced at 37 weeks because they were so swollen the doctors thought he might die... in the end all they did was perform an operation on one of the tubes leading to the kidneys, unfortunately the second kidney reached maximum capacity and did something nasty on his way out of the womb, then shrunk down and was scarred before they could do anything... but he is a perfectly healthy and normal boy... I have no idea about cysts though..... I think it means the baby has a higher chance of Downs, but not that much higher if they can't find any other abnormalilties...Hope they're both ok!

VeniVidiVickiQV · 31/01/2006 18:30

I hope everything turns out okay CM. Will bump your thread for you when i find it. xxx

fastasleep · 31/01/2006 18:31

(They gave me a load of drivvle about possible terminations, possible kidney transplants etc etc.... I think they have to cover their bums a bit)

chicagomum · 31/01/2006 18:31

Hi qv thanks . BTW how are you heard you had a bad night and were feeling rotten this morning.

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Blu · 31/01/2006 18:34

Chicagomum - really sorry i missed this earlier, and very sorry indeed that your sister is going thorugh this.

Firstly, lots and lots of things are identified as 'soft markers' for Downs and other choromosomal abnormalities. I was distraught until I actually found out what 'soft marker' means - which amounts, I think to a very slight unproven link!

Secondly, i have a friend who had a baby with a very large cyst on a kidney - so large that the development of her other organs were affected - BUT grew to the expected size after the cyst had been dealt with. The baby had some form of surgery in utero, to remove large amounts of fluid, and then some sugery after birth. But she is now a very sparkly 2 year-old. Shewas diagnosed and treated at The Foetal Medecine Unit at King's College Hospital, where one of the things they specialise in, I think, is in utero kidney procedures. It is the Harris Birthright Trust Unit, under Prof Nikolaedes (??)

Could she ask for a second opinion there? They deal with women from all over the country.

Of course, not everything is always solvable, and my best wishes are with your sister for a happy outcome. This must be unbearable for her.

VeniVidiVickiQV · 31/01/2006 18:34

oh, have got a nasty tummy bug. DD and DS still ill. Just when i thought DP would be home this pm and look after me - well he came home and he now has the bug too .

Not so terrible in the scheme of things but boy am i exhausted.

Blu · 31/01/2006 18:39

Chicagomum - I do think Fastasleep is right abou bum-covering.

There was a poster on this site who was advised that she could have a termination (at 30 weeks) because he baby had talipes - clubfoot. Now the baby is born, it was found to be 'positional' - i.e correctable with physio!! I was frightened out of my wits about my DS's leg, and warned about all sorts of linke stuff which our consultant later asid were 'rarer than hen's teeth'/

Another MN-er who works in a big teaching hospital told me that both these consultant's dire prognoses would be because of the danger of being sued, and that all the worst possible outcomes had to be discussed, no guarantees etc etc..

I'd say - get her to go to King's for a 2nd look and opinion, and advice about what can be done for the baby.

dejags · 31/01/2006 18:45

You, your sister and her family are in my thoughts Chicagomum.

I'll be keeping everything crossed and look out for an update on Thursday.

love
dejags

chicagomum · 31/01/2006 18:51

QV hope you are feeling better soon. Dejags thanks for your (and everyone elses kind words). Do email me 9(if all is ok and we do come in a couple of weeks with a telephone number so we can meet up on the beach etc).

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hunkermunker · 31/01/2006 18:55

Oh, CM

Have no advice, but will be thinking of you all and hoping so hard that everything is OK x x x x

chicagomum · 31/01/2006 19:36

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chicagomum · 31/01/2006 19:42

Have just got off the phone to her. She sounds so strong (whilst I feel so pathetic). Have offered to take her dd for a few days if it will help and told her I was looking for specialist help. Don't know what else I can do .

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VeniVidiVickiQV · 31/01/2006 20:07

You are doing everything you can do CM. Offering help and support where you can, and finding out as much for her (her head is probably spinning) is as much and the best you can do. I wish i had a sister like you

xxx

chicagomum · 31/01/2006 20:35

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VeniVidiVickiQV · 31/01/2006 20:53

bump

chicagomum · 31/01/2006 21:10

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lucykate · 31/01/2006 21:25

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hunkermunker · 31/01/2006 23:40

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Hausfrau · 01/02/2006 08:25

This reply has been deleted

Message withdrawn at poster's request.

VeniVidiVickiQV · 01/02/2006 21:31

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