Newborn with Kidney Failure - please help!

[Twinkie1]

Right girls I need your advice.

My best friend had a little boy last week - he is beautiful - was fine for the first four days and then got rushed to Great Ormond St with kidney failure, his body swelled up with retained fluid and his umbilicus was rotting from inside!

I went to see them last night and was shocked at just how well he looks but am told that he is to have a scan tomorrow and then they will know what is on the cards. They have said that he may at some point need a transplant as the cysts on his kidneys caused by them not draining burst and if he does have to have a transplant he will have to wait until he is 18 months. The best that they can hope for though is one of his kidneys is well enough to get him through to puberty and then he will need a transplant. He may also be very short - although this can be counteracted with good diet.

He is not on dialysis and is in the next few days going to have a operation to remove a flpa of skin in his ureathra which is the cause of all the problems.

My friend is in pieces. She is saying things like - I don't want to get too close just in case he dies, or she is not sure how she feels about him now as he is not perfect anymore and she doesn't want people looking at him and thinking they are glad that he is not theirs or that they feel sorry for her and pity her. I think it is all just too much - he other kids are at home with various members of the family and althogh people visit her she is often alone for long periods especially in the evening.

The nurses are stretched too and there is no counselling or advice to help her cope with the barrage of emotions that she is feeling at the moment!

Can anyone help? WHat can I say or do to confort her? Are there any organisations out there to help parents going through something like this?

Has anyone been through this?

All comments appreciated!

Tx

Oh your poor friend.

No advice, but a bump for you - hope someone more help sees it.

Twinkie1 - sorry I have to post and run.

Your friend is grieving for the healthy baby she thought she was going to have. It's a very difficult time but a natural process - I remember it so well, especially about not getting too close. I nursed dd 'at arm's length' for her first year - physically so close to her but emotionally not quite connected - difficult to explain really.

What can you do? Be there for her, let her talk, help out with the other children, get to the hospital if you can to give her a break from the bedside and relieve those long evenings.

There will be some support groups out there I'm sure - specific to her baby's condition.(is it Polycystic Kidney Disease? There is a PKD Association if that is the right condition) GOSH probably have a Renal Liaison Nurse who may be able to point her in the right direction. It's a case of just asking sometimes but often in that situation your head is elsewhere and you can't find your 'voice' so to speak. Perhaps it's something you could do for her.

Hi Love

Its not PKD - it is all to do with a piece of skin in the ureathra which has formed - probably at about 8 weeks gestation and stopped the urine passing out of his little body.

Its good to know that it is normal to have the feelings she has as I was a bit shocked at first when she said she was sad he wasn;t the perfect little baby she first thought he was - to us he is still perfect so tiny and helpless - it is just so sad.

I will have a look onthe web and see if I can find some sort of support group or helpline for her I suppose.

Obviously these links won't be relevant if it's not PDK but

This PKD charity

and this is a UK based Yahoo support group

Hope this is helpful.

Sorry - x-posts - no use then. Hmm - You could try British Kidney Association.

She will get her head around it Twinkie - it's just such a shock when you think you have a perfect baby and then things go wrong so quickly.

Must go. Take care.

www.kidney.org.uk/Medical-Info/reflux/cause.html[ does it sound like reflux?]]

hopefully there wont be too much scarring. youd be surprised how many people have scarred kidneys, or even one kidney, and know absolutely nothing about it.

wee lamb - i hope hes ok

best wishes

oops

does it sound like reflux?

Many sympathies for your friend, Twinkie, it must have been such a shock, I'm not surprised she is feeling overwhelmed. Is her little boy's problem this?

Posterior urethral valve obstruction: This narrowing or obstruction of the urethra affects only boys. It can be diagnosed before the baby is born or just afterwards and treated with surgery.

It sounds like the surgery will help things enormously, but your friend is still going to need masses of support. Do encourage her to talk to other parents who have been through similar things. Hope she is feeling stronger soon.

This sounds like the urine was backflowing from the bladder obstruction causing scarred kidneys.I had kidney failure and a transplant as a teenager and a further transplant when i was 35 I am 42 now.I probably had kidney disease as a child but no one knew.It will be so hard for her initially and I hope the hospital can help her come to terms with this.If and when he needs a transplant the parents will be possible donors and results are succesful but it is a lifelong condition which needs to be managed and watched I am shocked that there is no counselling Can she ask her GP if there are any locally>?

Hi guys, yes I think it is posterior urethral valve obstruction.

We will know a bit more tomorrow about the degree of the damage to his kidneys - they did say he was very lucky that it was picked up so early and can sometimes be much much worse if left for even a few days more.

The maternity service where she lived was crap to be honest - 3 times she flagged that he was not passing urine and they said oh but he is a little and left it at that. She had an extra scan but it was not picked up then and her midwife failed to ring her back when she left messages detailing her concerns.

When she was discharged from hospital she mentioned the problem and that they had not ticked the box saying he had passed urine in his notes and they still discharged her.

She is so sad - this is her forth and last child and she wanted to baby him more than the others I think and spend more time with him and now she is just seeing all the trouble and heartache ahead!

Noddyholder - do kidneys only last a certain period of time when translanted - why have more than one transplant?

A transplant has a life span but is very difficult to predict.A good live related transplant is the most successful My first lasted 15 yrs before i had the second but that included a couple of yrs on dialysis.The 2nd one which is still going now I had in 2000 and seems to be very healthy.It depends on a lot of factors.rejection in the short and long term.But I have had a great life travelled and worked and had ds so anything is possible but it has taken me years to have this mindset and your friend will take time to come to terms with things.He may jst need treatment and never need a transplant which would be the perfect scenario.But kidney failure is still a life just a different one that you would hope for and especially difficult when it is your baby

Twinkie, post on UKPL (Uk Parents Lounge)too. I know a regular there who had this with one of her twins, she knows a lot about this subject and has councelled many other parents going through similar. She also works as a councillor (not in this particular subject matter) and should be able to reassure and explain.

Thanks guys

This is so helpful - so mush for her to take in at first but hopefully the little guy will be ok - I will have a look on UKPL darklands and I will show her your messages and explain to her about greiving for a healthy baby.