What would you do? baby with kidney problems

My SIL is pg with #1 and DH family have a strong history of kidney problems. DH lost a kidney at age 3. DH father lost his kidney and DH brother was stillborn due to the same problem called hydro nephrouses or something - no idea how to spell it. The saw a genetic counsellor before conceiving who advised for US examination specifically on the kidneys at 20wks however this wasn't done as the US trech just brushed them off so they paid for one to be done privatelt. At this one they were told to come backat 34wks for a follow up which showed further dilation of the tube and now a collection of fluid (hydronephrouses). They were told to take it to their OB but they are doing shared care and their understanding GP has left leaving them with a GP they don't like and the midwife at the hospital has just brushed them off saying there is nothing they can do until bub is born.

SIl is very nervous due to the stillbirth of DH brother suffering the same problem. does anyone have any advice as I have no experience with the public system. Thanks

Hi Sarah

Public hosptial or not that treatment isn't good enough. There may be nothing that can be done until the baby is born, but I think at least a paediatrician should be consulted so that a plan can be developed. It isn't up to the midwife to have the final say.

Trust me, it is worth jumping up and down and making a deal of this, your SIL has every right to be worried, if you don't get answers from the midwife she is seeing, asked to be seen by the head midwife and if that doesn't work, ask to speak to the highest person she can (not quite sure who that would be)

Just keep insisting, that is all I can recommend.

With this pregnancy I am sure the obs/midwifes think that I am an insane, neurotic, worry wort but hey I am not in this to make friends, I am here to have a healthy baby.

I really hope you SIL gets the care she deserves.

Best of luck
Lv Spring

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Hi Sarah

Public hosptial or not that treatment isn't good enough. There may be nothing that can be done until the baby is born, but I think at least a paediatrician should be consulted so that a plan can be developed. It isn't up to the midwife to have the final say.

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I agree with Spring.

I had my first baby in the public system and it's fine when you have a nice, uncomplicated normal pregnancy. But if you have a problem it can be a pain the you know what.
Your SIL needs to get REALLY assertive and stand up for herself and her baby. Even if she is under shared care there will be an obstetrician available through her midwifery clinic - she needs to ask to see him/her, at the very least. I agree it's not a decision for a midwife who's not familiar with her family history to be making off the cuff like that.
My experience in the public system when I had issues with my pregnancy was basically ask questions, and keep asking until someone gives you a satisfactory answer. Once they realise that you won't be brushed off or easily shut up then they will start giving them to you.
Does she have someone who can go with her to her appointment and back her up, often if there is someone else in the room "witnessing" the conversation it will be taken more seriously as well.
Good luck I hope it's all ok for her.

Thanks, guuys. I felt really bad as I told them to be pushy and go in there today and ask to see someone and they rang the hossy and they said to come on in and they would get an OB to look over it before clinc however when they got there they were headed off by the Midwife from Hell. My SIl and her DH are beautiful people and far too nice, so they are now quite put off from going in there and very upset by this midwife brushing them off and telling them it is very common and they will have to wait until after the birth.

They have an regular appointment with their midwife at the hossy next Monday so they are hoping to get a better response there otherwise I said they might want to go and see a private OB just to get a second opinion. can you do thei if you are going through the public system? Do you need a referal?

Sara - I agree with the others; this ehavior is awful! If they can't get anywhere with the hospital or aren't comfortable standing up to them (confrontation isn't for everyone) there *should* be a patient liasion nurse within the hospital.Ask to talk to them and they will assist them in getting this sorted. Considering the family history and the U/S result, I would expect the hospital to take some sort of action - even if it is referring them to a pead. There baby is obviously going to need special care from birth so it is better to have something lined up (in my opinion). I hope that your friend has some success in getting some assistance with this.

MG

Sarah, this is NOT very common. You may recall that I used to help organise a high-risk pregnancy clinic for two years, I didn't have a case of hydronephrosis ONCE. They need help NOW and I hope they do stick up for themselves.

What is it with midwives getting too important for themselves? I'd complain about the midwife whilst talking to the PALS (patient advice and liaison service) person.

I think all the other ladies are totally correct in what they are saying, something needs to be done now. I wouldn't wait until Monday, I am not saying anything will go wrong, but this condition sounds like it is serious so who cares what the big bully midwife says, this is not about a power trip, this is about the health of an unborn child.

I say they should go in tomorrow and refuse to leave (chuck a tantrum if need be) until they have seen an Ob and a Paed.

Best of luck sweetie.

Lv Spring

I know with a kidney problem there isn't much they can do until after the baby is born and then they can start running tests but make sure they ask for them tests as soon as the baby arrives.
A ultrasound on the baby will show more detail and also they might want to do a x-ray where they insert fluid in to the baby to see if there is a blockage.

I went through all these tests when Alex was born they was meant to start them before we left hospital but because he had other problems they forgot until we where home. Alex still has a slight dilation but nothing to worry about.
They did also think Eleanor was going to have the same problem but it turned out she was okay in the end.

The fact that they cannot do anything until after the baby is born is even more reason that your SIL finds out everything she can now.
I would get a referal to a different OB asap

I would demand to see an OB, if you are not happy with that Ob you have the right to request a different dr, or even ask for the registar.

Make it very clear if you do not feel you are being properally listen to and looked after that you will be lodging a formal complain with the hospital and possibly the health minister.

You have rights in the public system, and you have the right to request a new dr and midwife. You also have the right to complain about your care until you are happy with it (when there is something wrong)

As nice and understanding as your SIL may be, it is about the health of her child, and i wouldn't hesitate to make a fuss about it.. Who cares if the midwive gets reprimanded, that is not your SIL problem. And even if they are right, and the baby is ok, your SIL still deserve to have her qns/concerns dealt with, as her emtional well being is just as important.

If the dr specifically asked about having the kidneys checked, i would be making a complaint about the ultrasound technologist also. Its not right that they have to pay to go private when it was requested for medical purposes.

I'm sure there is somewhere you can look up about patients rights.. I only know a lot of this as my mum is a nurse & midwife, and basically tells me to make a fuss when i'm not happy and not to take it lying down.

Thanks for your respnses, I have passed them along to my sil and she is ready to go into battle for herself on Mnday and has made a nice clear list of what she wants to happen including having everything explained to her, a plan of action for when bub is born including whether or not she should be induced and if she should travel to brisbane to have the baby so they aren't seperated if the baby needs a higher level of care then they can give her at the regional hospital and also asking for weekly scans to check on bubs progress. Fingers crossed she gets some well deserved answers, will keep you updated.

Michelle, thanks for your response

Ryn thank you also it is good to know that it is not common as the midwife saying this made them feel really stupid.

Hi Sarah,

More frequent and higher quality US scanning is now finding more babies with some degree of hydronephrosis than ever before. Some of these resolve after birth, and some don't and need surgery. I was very surprised to hear of the stillbirth due to hydronephrosis - my suspicion is that there were other abnormal things going on in there and the kidney problem was just one of them. The family history isn't great to hear though so I can understand easily why you are all concerned. Nobody likes to be told things are not quite normal and then not get any different care or investigation.

Oops gotta go will post more for you later - my husband has hydronephrosis so I can fill you in on his experiences etc and some advice.....

Sorry about that.

Anyway, just over a year ago we discovered that my husband (aged 29) had severe hydronephrosis in one kidney. He'd been having some side pain for a couple of months, dr's thought it was likely to be gall bladder. 2 blood tests, one US, a CT, and a pyelogram later - severe hydronephrosis diagnosed due to a narrowed UPJ. His kidney was more than twice normal size. He went to see a specialist in Melbourne who booked him in for surgery on the next available surgery date, and he had a robotic assisted laparoscopic pyeloplasty (basically they do keyhole surgery with a robot and correct the obstruction etc). He was out of hospital in under 3 days, back at work the next week, which is very speedy indeed.

The consensus is that he's had the problem since birth, but it never caused him any symptoms for 29 years or so. This was quite a surprise to the surgeon, as most operations are on younger people. So it's not always something that is fatal to babies, or always causes immediate and major problems - however for some babies it can cause pain and difficulties early on.

They're right - there's nothing they can do until baby is born, but it wuold be worth another US with a paediatrician's opinion on it so they could plan what happens next after the birth. I'd find a good paediatrician or good renal specialist who deals with this problem frequently and show them the DVD of the US and discuss what happens next. I've had a quick look on the net, and there's a urologist in Townsville so that might be your first point of call, or a paediatrician (you would need a referral from a Gp/Dr).

It's probably not anything that would require an induction, special care, or to deliver in a more major hospital really - but it would be good to pre-organise some tests for the baby after it is born, so they don't feel fobbed off and the problem is well monitored.

I wish them all the best, hopefully all will turn out well for them and baby.

Thanks Feathertop I really appreciate your advice and experience.

Update: SIL was able to see an OB today who is getting another scan done next week to check how bub is progressing and check measurements and was able to reassure them which is excellent, they are now feeling much more confident about what is happening so fingers crossed for a safe delivery and healthy bub in a few weeks, thanks for all your advice girls

Glad that visit was helpful to them, hope all goes well for the rest of their pregnancy.