Autosomal Dominant Polcystic Kidney - in-utero

Do you have a young child or teenager with ARPKD or ADPKD? Talk to other parents who are caring for children with PKD.
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Autosomal Dominant Polcystic Kidney - in-utero

Postby Dotty1972 » Wed Jun 25, 2014 1:56 am

Hi All

On Feb 28, I went for a routine scan for suspected return of endometeritious, and saw the miracle of a 'Yolk', we were 4 weeks pregnant. This miracle was very welcome after 2 failed IVF attempts 6 years ago, and lots of people in white coats saying we had a 1% chance of conceiving with my eggs (I'm now 41 and 6 months .... Over the fertility hill apparently!)

We are now 21 weeks + 5 days pregnant, and at scans at 21 weeks and 21 + 3 days, our baby boy has been diagnosed with Fetal renal disease kidney bilateral.

The fetus has bilaterally enlarged, echogenic and multicystic kidneys. They are double the size they should be, his stomach is enlarged and bladder is small. As I have Autosomal Dominant Polcystic Kidney Disease on both kidneys, their diagnosis is highly suggestive of an affected fetus. When ADPKD is detected in-utero, we have been advised that it is likely to be a severe form of ADPKD. Previous studies have shown mortality rate of up to 43% within the first year of life.

At present there is adequate amniotic fluid with some kidney function, but they say that they are not able to predict if there will be continued kidney function or if this will deteriorate.

They have given us the options of continuing with the pregnancy and awaiting how the condition progresses with a rescan on 7 July. The alternative option of ending the pregnancy has been discussed including the mode of termination of pregnancy with intracardiac potassium chloride injection and then Iabour would be induced.

At our next appointment a paediatric urologist will be present.

We are living in a nightmare.

I would like to know if any of you have any experiences to share with us at this time.

Tell me how it is, no sugar coating. Anything outside of the doctor's statistics will help us greatly.

Many thanks
Angela (based in UK)


Re: Autosomal Dominant Polcystic Kidney - in-utero

Postby Stephanie » Wed Jun 25, 2014 12:53 pm

Hi Angela,

I understand how you must be feeling. I remember when the doctor who first suspected that our son had ADPKD flat out told us that this might be a death sentence for him. I was in shock. I don't think I will ever shake that feeling of laying there for what I thought was a fairly routine visit. I was at about the same point in my pregnancy when they found this out and they also found that I also had ADPKD at the same time (as it doesn't skip generations and my dad and grandfather had it). I'm sure you already know how wrong doctors can be some times since they told you it was unlikely you would conceive. It sounds like your situation is a little more complicated than mine as my son just had enlarged kidneys with possible cysts on them. My fluid was a little on the low side so I was monitored closely and a couple days before I was due, my fluid was too low for the doctor's liking so they induced me.

We were given a lot of the different studies including this one .

The study only follows 26 children but the only ones who had CRI (and needed dialysis/transplants) were in their older teens. This study was also started in the early 80's when ultrasound technology was not as good as it is today, so most likely these cases had to be fairly obvious/severe.

I'm not an expert in all this but I have done a little research. I think they are catching a lot of ADPKD earlier than they would have 10 or ever 5 years ago due to the increase in technology. My son is currently 11 months old and doing incredible well. I would not have even know about the ADPKD if they had not caught it in the ultrasound. He has no symptoms as of yet and is going back to the hospital for a check up in October.

Sure you may have some bumpy roads ahead of you, but ADPKD is not a death sentence. You might want to join the facebook group PKD in Children (PKD Foundation). There are a lot of other parents of kids with this. Hope you get some encouraging news at your next appointment. Also, if you haven't already, get a second opinion from a nephrologist at a hospital in the UK. I am from the US but a few other parents on that facebook site are from the UK and can suggest some good hospitals.


Re: Autosomal Dominant Polcystic Kidney - in-utero

Postby Dotty1972 » Fri Jun 27, 2014 2:11 am

Thanks so much for your reply.

We are also going to see someone today who practices the Cranial Technique.

We'll try anything to get our son to a save birth with good renal function.

Angela xx


Re: Autosomal Dominant Polcystic Kidney - in-utero

Postby Michele » Mon Aug 04, 2014 8:36 am

Hi. I am so sorry to hear that the doctors are not giving you much hope. I have two sons with ARPKD but do know a few families with babies with ADPKD who presented severely in utero. There is a mom who has ADPKD and one of her daughters had a transplant when she was two. Her son was also diagnosed in utero and is doing well. We have a Facebook group called PKD in children. There are a lot of ADPKD families there.

Last bumped by Anonymous on Mon Aug 04, 2014 8:36 am.

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