help with medical info/problem

[gixer1]

Folks,

 

I am looking for some help of a medical type in that can anyone on here help explain or comment on how diallysis (spelling?) effects a person or does anyone on here regularly have to do this.

 

the reason i ask is a very, very good friend of mine and his wife are expecting, at a recent scan they discovered the babies kidneys are enlarged and have cysts on them and they are not functioning properly, the doctor/specialist explained that the baby was not in any pain - nor should be and that it would obviously have an effect as the baby would need to have diallasis until maybe the age of 2 when a transplant could be done.

 

as this is such a good friend my heart sank when he told me (as i have been through a problem preganancy with my wife and we now have a perfectly healthy son so we know how worrying it is) I said the usual things you say to a friend but i wondered if i can help with info and i made comment on some people being on dialysis for life sometimes (it says this on google)

 

My friend is about the most kind hearted person you could meet and him and his partner were given other options which i don't want to even say for fear of bad luck, they are carrying on and i have everything crossed as it wouldn't be the first time a mistake has been made in diagnosis of a pregnancy problem. (my wife and i were told we had misscarried and there was nothing they could do - we were even told of the medication for helping to move the pregnancy to the abort stage but luckily we didn't listen and a few months later we had a bouncing baby boy, the bleeding had turned out to be bad bruising of the uterus.

 

anyway,I just wondered if someone has first hand experience to better help us understand?

 

and also while we are on the subject did you/your wives pregnancy go normally or were there any out of the ordinary circumstances?

 

This is such an emotive subject and obviously some may not want to comment on thier own experiences so please do not be offended by my asking.

 

Regards,

 

Gixer

Edited October 8, 2010 by gixer1

[Mrs Sweepy]

Sorry i cant help with the first bit.

But i really do feel for them.

When i was pregnant with Little Sweepy

They found shadows on his brain Which we where told where cysts

he had about eight in all

So i was sent off for more scans which came back as unexplicable

I was told i could have the healthy baby But i should be perpared also for the worse.

 

So i went though the next four months not knowing if i was going to give birth too a healthy baby.

Must admit after a few weeks of being told i knew whatever happen this baby was going too get the best i could give it.

And if that meant it was going to be born with two heads or five feet so be it.

Poor Ash found it harder to cope with. But i put that down to the fact he was worried about me and the baby.

Where i knew i was going to be ok .

 

Anyway i went into labour on the monday and give birth on the thurdays . In the final stages my room suddenly was full of doctors and nurses. Whatever i was about to bring into the world. they where ready for it.In my eyes the NHS really are the best.

At 6.25 pm on september the 23rd

Little Sweepy entered the world screaming .

A seven pound healthy boy. And after all the check up was place on me too feed.

That night i just laid looking at how perfect he was .

I really did thinki was the luckest person on this planet.

 

My Dad is not a man for showing his feelings but my mum has told me since that they both where expecting the worse and where ready to be strong for me that night.

But when the midwife came out to then to tell them the good news .

Mum said he sat back down and cried .I allways think of that when i see the two of them together. They do have a close bond.And i think that is why.

I do hope that the feeling i had that night will be the same feeling your friends will have when its time for their child to enter the world. My thoughts are with them.

Please keep us posted

xxxxSuzy

[libs]

Call me heartless, but this is one of thoese areas I see with crossover to shooting. I really do feel, and hope that I never have to make the decision, that I and any future partner would have the courage to terminate a potentially very sick child from being born into a world of suffering.

 

We all make great claims to never let an animal suffer so why let it happen to a child. Diallasis in any of its forms is very unpleasent, and that combined with a limited diet and energy reserve, the chance of being on anti-rejection meds for life should he be lucky enough to get organs would lead to a whole lot more suffering that a winged bird will ever endure.

 

I know this is a 100% personal issue and I am sure you will support the family no matter what. My opinion is pretty hardline on most things but its not for being cruel, its the total opposite having seen quite a simular situation destroy a family.

[gixer1]

Suzy,

 

Thank you, that is exactly the type of story i was looking for, i said to my friend - out of the 6 pregnancy's at the time my wife was pregnant (friends etc) all 6 had complications during the term but all 6 babies came out fine, that ranged from preclamsia (spelling) with 2 of them, the bleeding and being told of a misscarriage for 1 (my son), fluid on the brain of one, one baby in the wrong position and spinabifida concerns with the 6th, this shows that the doctors have to prepare parents for the worst - but that the worst doesn't always happen!

 

It may seem like a strange topic for a shooting forum but there are such a varied spread of people that cover such a wide range of experience that it may be of some help to me to help him.

 

Thanks again.

 

Gixer.

[gixer1]

Call me heartless, but this is one of thoese areas I see with crossover to shooting. I really do feel, and hope that I never have to make the decision, that I and any future partner would have the courage to terminate a potentially very sick child from being born into a world of suffering.

 

We all make great claims to never let an animal suffer so why let it happen to a child. Diallasis in any of its forms is very unpleasent, and that combined with a limited diet and energy reserve, the chance of being on anti-rejection meds for life should he be lucky enough to get organs would lead to a whole lot more suffering that a winged bird will ever endure.

 

I know this is a 100% personal issue and I am sure you will support the family no matter what. My opinion is pretty hardline on most things but its not for being cruel, its the total opposite having seen quite a simular situation destroy a family.

 

 

Libs, totally understand, and this is something every parent has to consider and weigh the options, I would never judge anyone for going either way as i feel both take an emmence ammount of courage on the part of the decision maker(s)

 

Thanks for the input.

 

Regards,

[Mrs Sweepy]

At the end of the day its down to you as the parent.

What you can offer that child.

I went though the first few days after i was told thinking i couldnt go though with it.

But then you just get this feeling of love (i know job to explain to men)whatever the outcome.

This baby was my responsibilty and it may have had a bad start but i was not going to give up on it

At the first hurdle.

I have seen severally handicap children enjoying life believe me they really do know how too show love back too you. Yes they have pain but so do many able body people too.

So why shouldnt they be given a chance to enjoy life too

[Guest gloker]

http://www.nhs.uk/conditions/dialysis/Page...troduction.aspx

 

http://www.kidneydialysis.org.uk/

 

Couple of good websites. hope they help a bit.

 

Two things,

 

1- they dont always get things right. We were told some real horror stories about our boy before he was born. He was predicted to be grossly underweight and his head was too small and that he would be in scbu (special care baby unit ) when first born, may not survive etc etc etc. They induced my wife at full term and out came 7lb 1oz perfect baby boy. ? the stress and worry it caused us is unimaginable. No wonder my wife developed pre eclampsia.

 

2- This could be a call to arms for anyone who isnt an organ donor already, to register online now. http://www.organdonation.nhs.uk/ukt/default.jsp

 

Im not going to bang a drum about organ donation but being in the job I can only stress that it helps people from both sides. The donors family and the recipient.

[gixer1]

http://www.nhs.uk/conditions/dialysis/Page...troduction.aspx

 

http://www.kidneydialysis.org.uk/

 

Couple of good websites. hope they help a bit.

 

Two things,

 

1- they dont always get things right. We were told some real horror stories about our boy before he was born. He was predicted to be grossly underweight and his head was too small and that he would be in scbu (special care baby unit ) when first born, may not survive etc etc etc. They induced my wife at full term and out came 7lb 1oz perfect baby boy. ? the stress and worry it caused us is unimaginable. No wonder my wife developed pre eclampsia.

 

2- This could be a call to arms for anyone who isnt an organ donor already, to register online now. http://www.organdonation.nhs.uk/ukt/default.jsp

 

Im not going to bang a drum about organ donation but being in the job I can only stress that it helps people from both sides. The donors family and the recipient.

 

Gloker,

 

Again - thanks, for both the websites and also the story - in the space of 2 ours alone that is 2 examples of how hard these things are to diagnose, and how they are not nesassarily correct every time - i'm not knocking the doc's or the NHS just saying take what you are told with a pinch of salt.

 

and the organ donation link - please if not already on it go on and register!

 

When you are in a position to give them you probably won't need them!

 

Regards,

 

Gixer

[Aled]

Hi Gixer 1

My Mum worked as a dialysis nurse for over 30 years (retired now), therfore i know quite a few dialysis patients. Can i say that the quality of life enjoyed by people on dialysis is in this day and age very good, and although the situation is not perfect a child can have a healthy and happy life.

Hope this helps.

Cheers

Aled

[gixer1]

Aled,

 

Thanks, I think the concern i have in my head is I know how hard it is to try and get my son to comply when putting on a nappy (they do that thing where they death roll like a crocodile to stop you putting the nappy on! :look:) so i'm thinking if you need to connect tubes etc up to a little baby or toddler and it is moving around how do they manage it!

 

Everything online is pointed at Diallysis for adults, i can't seem to find alot on newborns or infants?

 

Regards,

 

Gixer,

Edited October 8, 2010 by gixer1

[Guest gloker]

The process for neonatal and paediatric dialysis is different from adult haemodialysis and if required there will be a small catheter that just tucks out of the way during nappy changes.

 

My advice is dont google looking for neonatal dialysis, There is a lot of rubbish on the internet and there is a lot of depressing carp on there too.

 

Stay positive for your friend. It may not come to dialysis at all and even if it does, with correct treatment naeonates can regain function of the native kidneys. Dont worry too much and just be there for your friends.

[bruno22rf]

Accurate kidney function tests are extremely difficult on an unborn child-if they do turn out to be u/s then dialysis is not a huge problem for one so young but can be time consuming and worrying for the parents.Should the kidneys be part functioning then they may serve the child long enough to reach transplant age-you can get by with about 40% of normal function with the downside that the child may not grow as quickly as a "normal" baby.When the time for transplant arrives then the table turns somewhat in the childs favour because young children are very good transplant recipients with a good life span before another transplant is needed-this is because the transplanted organ (unless the child suffers rejection) dies a little at a time and young children can recieve quite a large organ to begin with.Assure your friends that the operation is not painfull and recovery can be as little as 5 days-modern drugs are very good at suppresion without too many side effects and , contrary to popular belief, the child will not spend its life catching colds/bugs and being unwell.They will need a positive attitude to help see them through the times ahead and good friends go a long way to making things more bearable-wish them good luck from me and ,im guessing, everybody else on this forum. p.s. The Churchill hospital in Oxford is an outstanding place to go for all things Renal.

[reddan]

Hi,

 

Have a very good idea about this. I take it the scan is a later one and there is sufficent fluid round the baby?

 

My unborn son was diagnoised with the same thing and what I never knew was that the baby's kidneys are what produces a lot of the fluid it sits in which is later used for lung development. Although my son had kidney problems (aka non functioning) it was under developed lungs that sadly killed him shortly after birth.

 

PM me if you want.

 

Dan