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511

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EW GURU

Latest post on 25 November 2013 - 19:02

For now they just need to monitor and can do nothing until birth (though they have said sometimes, but very rarely, they do have to drain the dilated kidney in utero, or there can be problems if amniotic fluid is running low but since it's not bilateral shouldn't in theory happen) and I may be induced early, but for now it's just monitoring. In the medical report has termed it as 'severe' with an echogenic cortex which on the scales I have seen is grade 4 and it is more than likely to be quite damaged already by birth, so in these cases they need to do something quite quickly if they are going to have any shot at saving it. Hence, my dilemma over where to give birth. If I end up having a c-section then it will be several weeks before I can fly, so need someone who would be ready to do something here. We are with Daman which also doesn't cover congenital issues until after 30 days, but my company provide full health coverage for anything not covered by the health insurance on top of that, so that does give me some piece of mind.

1370

Posts

EW OLDHAND

Latest post on 25 November 2013 - 18:37

I might be wrong but I think you have time on your hands. I don't think it needs dealt with immediately so it may be that you could deliver here then go to UK. If you can find somewhere that offers Mag 3 scan that should be sufficient for doctors back in UK to give an opinion. Our urologist in Adelaide stressed that I could see several specialists and all would give a different opinion regarding treatment ie KL doctor wanted removal. She herself had twin girls not much older than our DD and I have a hunch this made her opinion much more conservative than other doctors. She was very much of the mindset that we had plenty of time and could afford to watch and see. It may be different for your baby but at no point did I get impression that it was something that needed urgent treatment. We had a problem with our medical insurance as despite being ith BUPA it did not cover congenital conditions. We were lucky as DH's company agreed to pay medical costs and we paid flights and rental accomm in Adelaide.

511

Posts

EW GURU

Latest post on 25 November 2013 - 18:21

Thanks again, I am following up on some options here and in the UK to see what each would recommend as a course of action, and what equipment and technology they have. (I think I am every Drs worst nightmare patient as I google too much and question everything!) I guess I am just a bit worried because I feel they are very heavy with just resorting to major surgery here and might just say 'remove the kidney' when it might be possible to give it chance and get some functionality. Thankfully I have a very supportive company who will pay my costs etc should I need to the UK for delivery and treatment. But ideally I would like to avoid going anywhere as it would mean I would spend a lot of time away from my hubby and he would miss out on a lot in the beginning.

1370

Posts

EW OLDHAND

Latest post on 24 November 2013 - 19:03

I am no expert but I think if there is anywhere that can do a Mag 3 scan that will show the functionality. We did not have the Mag 3 in Malaysia..they initially said it was available in one hospital then changed their minds??! I did however DHL all her other scans to Adelaide. She was 5 months old when she had surgery. We were also reassured that one kidney was perfectly feasible but like you I worried re something going wrong with that. Subsequent tests show NO scarring on her other kidney BUT she has slight loss of function in that one. The other thing that several doctors said to us was that before ultra sound scans these problems were often undiagnosed and many adults are problem unknowingly walking around with only one kidney properly functioning. Keep me posted.

511

Posts

EW GURU

Latest post on 24 November 2013 - 09:14

Thanks for your positive story Feefmick, it is great to hear that your daughter is doing really well. I know it is possible to have just one kidney (in fact the Dr said many people are living with only one functioning kidney and are none the wiser)I just feel if i could just get some functionality out of the 2nd kidney I would feel much better as we would really be in a pickle if something happened to that one. It's great you managed to get to see someone in Adelaide who was able to sho some functionality. I am just not sure if there is anyone who is enough a specialist in this in the UAE - as I would need a pediatric urologist who is used to seeing this and recommending tretment for babies (and that I would have confidence in!) What age did she have surgery? I know GOSH is a fantastic children's hospital so I am inclined to go there for any treatment privately.

1370

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EW OLDHAND

Latest post on 23 November 2013 - 22:22

Bellauk - just to let you know it may not be as bad as you fear. My eldest DD was diagnosed in Malaysai at 12 weeks of age aftercscreamnig virtually non stop since her birth. In KL they told us her kidney was non functioning and would require to be removed. I am ever grateful to a lady out there who gave us a contact for a urologist in Adelaide. When we took her there although the scams looked as if there was little function her Mag3 test actually showed function of around 80%. She had some exploratory surgery there and they discovered an aberrant blood vessel had been pressing on the ureter so urine was back flowing to the kidney. Since then she has had NO problems. When we moved back to UK she went to Birmingham Children's hospital. Again the ultrasound made things look really bad but when the mag 3 was repeated her function was ok, not perfect but ok. She is now 12 and was discharged last year from Birmingham Children's hospital. I appreciate this may not be case for your baby but wanted to let you know that things aren't always as they initially might look

511

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EW GURU

Latest post on 23 November 2013 - 19:50

Thanks for the suggestions ladies, in the end my Dr referred me to the FMC as she knows Dr. Mirza well and they squeezed me in the next day. Unfortunately looks like my wee one has a blockage which is not allowing the urine to pass from one of the kidney's to the bladder and back out. It means that by the time she is born she may only have one functioning kidney, as it may be too damaged from the pressure on the kidney tissue for the remaining 20 weeks. Obviously not news I wanted to hear, but a lot better than the outcomes I was coming up with from my previous googling! Now reconsidering my birth plan and I may go back to the UK to deliver because they can't really do anything until she is born and they can asses it, and at least there I can go privately to a really good children's hospital like Gt. Ormond St. to see if there is anything they can do to 'save' the kidney, though it seems to depend on the cause of the blockage. Let's just see!

548

Posts

EW GURU

Latest post on 21 November 2013 - 08:49

Just a note that Dr George is not a N9NE anymore, he is now at Genesis which I believe it is his own clinic. [url=http://www.genesis-dubai.com/about-us-2/doctors-dr-george/'>link[/url'> I also highly recommend him although I cannot compare to FMC.

228

Posts

EW NEWBIE

Latest post on 20 November 2013 - 22:11

Hi Bella - congrats on your other thread for finding out it is a girl, they are so sweet and you will adore the mother-daughter bond. I do hope she is OK, just to set your mind at ease, I know plenty of people who have had these sorts of minor scares during pregnancy, myself included which have turned out to be completely benign (in our case, baby measured small and after Googling all night I was convinced she had all sorts of diseases - she didn't!) I have been to both FMC and Nine clinic and preferred the Nine clinic - Dr George is lovely and reassuring and did my growth scan to confirm baby was OK. Virtually next door to the FMC in Healthcare city. Good luck x Hi bella, I second that. What I like with him is that he will not try to scare you just to have you go through expensive exam. He is thorough and reassuring. edited by KB75 on 20/11/2013 <em>edited by KB75 on 20/11/2013</em>

Bean Sprout81793

66

Posts

EW NEWBIE

Latest post on 20 November 2013 - 13:24

Hi Bella, The Dubai Fetal Medicine & Genetics Center is the best! Very thorough and the scans are clear as a bell! They have highly experienced doctors. Here's the link: http://www.fetalmedicine.ae/

511

Posts

EW GURU

Latest post on 20 November 2013 - 13:15

Can anyone tell where THE absolutely best place to go for the 20 week scan would be? I had a scan yesterday as I had some pains and just wanted everything checking out (being the worrier that I am) Dr said that everything was fine with that but while she was scanning she said she noticed some fluid in baby's intestine, and she said it was likely to be nothing (amniotic fluid) in which case it would be gone in a few days, so I am going back for a check tomorrow. If it hasn't gone she wants to send me to a specialist for my 20 week scan (which is in 2 weeks). Suffice to say I have googled myself into a frenzy and I am now worried sick about what it might be (everything from D/S to cysitc fibrosis markers) so if it does turn out to be 'something' that needs checking further I really want to go to the best most detailed, thorough places.

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