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[quote=Anonymous][quote=Anonymous][quote=Anonymous]Hi! My daughter has this! If you do a search you scan probably find my post from 2016 when we found out.

I know this is a very scary time. I was shocked (in our case they thought they saw one at 20 weeks and then at a random growth ultrasound raised it, so figuring that out was super stressful) and extremely worried for the rest of my pregnancy. We had our OB send us to the Inova FFX MFM practice for some more scans and to talk to a specialist. I got the vibe they thought it was unnecessary but they were very kind about supporting a panicked mom.

She was born perfectly healthy and is beyond fine! She’s six now. She has always been very healthy and has had really no medical issues related to the kidney.

She is also pure joy to have as a kid. I don’t get on here and brag really ever but for you, I will - she is an extremely bright, kind, funny, sweet, happy kid. I constantly get feedback from teachers and parents about what a special little girl she is.

She knows about her kidney because we see a nephrologist once a year and the only consequence for her is I make her drink extra water and she will probably not be steered toward sports like gymnastics or horseback riding where there’s a high risk of falls (that’s me, not her nephrologist, they say let her do whatever she wants).

I had a very kind mom come on here and tell me something that became true for me - now that she is a child, I truly never think about it. That was unimaginable to me when I was so scared my baby would be sick or have a more difficult life because of this.

Because I'm pretty out there with it, we have learned over time of many people who have this — one was a guy my husband worked with who found out incidentally during an MRI after he hurt his back running marathons. Another found out when she was pregnant and went on to have two kids.

I’m sending you the world’s biggest hug! I am not judging you for thinking about TMFR but unless the doctor has identified something else and pointed you in that direction, I do not think that’s something to think about at all. [/quote]

Thanks this is so helpful, when you spoke to the specialists, did they how often this is associated with other co-existing conditions vs as a stand-alone issue?

What kind of specialist did you see? We already have a high risk MFM but would like to see more specialists to get more info too [/quote]

If they did not see other things on the ultrasound, I would be quite optimistic that it is an isolated issue. If you wanted to, you could see if an MFM would do a fetal echo because there is some association with heart issues but after we did a better resolution ultrasound 2-3 weeks later (the soonest they let us do it, agonizing) and everything looked good, my doc recommended against it. Her heart is perfectly fine. The MFM was very kind and basically said, if this is your thing that is "wrong" with your baby, it is one of the best things to have and not to worry.

After she was born, we had an ultrasound of the kidney and reproductive organs in the hospital. Because she was otherwise healthy, that's all we did. We saw a pediatric nephrologist sometime after 3 months and had a few scans of the kidney as it grew. Generally, when they have one, it grows bigger to compensate and they have about 80% function of a person with two (but some kids have 100% function). All of her blood work has been good.

I don't think a ped nephrologist would have seen us prenatally because there were no other concerns but you could certainly ask about it. [/quote]

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