Anonymous
10/03/2023 23:24
Subject: Baby with only 1 kidney
Goodness no don’t terminate for this! Lots of us have solo kidneys and don’t even know it because the imaging was crap back when we were in utero. My kid has one and gets an ultrasound once a year to make sure the good kidney is okay. That’s the only time we even think about it.
Anonymous
10/01/2023 20:38
Subject: Baby with only 1 kidney
Anonymous wrote:Anonymous wrote:My second son has only one (I had a though time with it found at 32 weeks after at 20 weeks they supposedly saw two). He is the light of my life, he is my last baby and is the cutest, most amazing, most brave I know. He’s like a tank in a good way and I imagine my life without him. We’re now at yearly visits since all is well. I had a hard time (think crying nonstop for days after giving birth) calling for that first ultrasound scheduling after he was born but that’s in the past. I adore him. See a MFM but they’ll probably be unphased.
Op here. I did a search and I think I came across your old posts when you first found out and from when you were postpartum. Were you the poster feeling guilty that you’d “ruined your perfect family” (to quote the post) from around 2022?
Is your son completely fine otherwise now?
Yes that sounds like what I wrote, that’s why I wanted to reply here to you because I was grieving, and I had the hardest possible time (it was so out of my control and during covid and I was dealing my then toddler but the hardest part is the uncertainty). When he was born they did an ultrasounds and they confirmed one kidney, I had another breakdown I had a panic attack I broke out in hives my c section started bleeding. And he’s now two and just amazing, the only time time I think about it is when he has a fever and I have to give him Tylenol that’s not as strong as ibuprofen (even though doctor said it’s fine to give either). He did more frequent ultra sounds all is fine, when he has fever I worry about UTI but of course a strep comes positive.
He is just perfect though not sure if it’s because he’s my last baby but he looks, acts, and just is like a little angel (even his tantrums are adorable lol). I love him to bits and pieces and those thoughts I had then are gone, they just slowly go away over time.
But all to say I get that sense of loss. If nothing else seems wrong, if doctors don’t see anything else, if you did the NIPT, truly he’ll be okay. And you’ll love him and protect him tremendously. I have a supportive partner who let me feel my feelings so that also helped.
Hang in there, it’s hard but not impossible.
Anonymous
09/30/2023 22:17
Subject: Baby with only 1 kidney
Anonymous wrote:My second son has only one (I had a though time with it found at 32 weeks after at 20 weeks they supposedly saw two). He is the light of my life, he is my last baby and is the cutest, most amazing, most brave I know. He’s like a tank in a good way and I imagine my life without him. We’re now at yearly visits since all is well. I had a hard time (think crying nonstop for days after giving birth) calling for that first ultrasound scheduling after he was born but that’s in the past. I adore him. See a MFM but they’ll probably be unphased.
Op here. I did a search and I think I came across your old posts when you first found out and from when you were postpartum. Were you the poster feeling guilty that you’d “ruined your perfect family” (to quote the post) from around 2022?
Is your son completely fine otherwise now?
Anonymous
09/30/2023 21:20
Subject: Baby with only 1 kidney
Definitely seek out more information. I know people with one kidney and they're totally fine. I also know someone who had a horseshoe kidney and several other congenital issues that were much more limiting.
Anonymous
09/30/2023 21:11
Subject: Re:Baby with only 1 kidney
I’m sorry op, when you’re pregnant things feel extra scary. You have gotten a. Lot of good responses, just wanted to add to the chorus that my dad was born with one kidney and has had truly 0 issues of limitations because of it. I only know about it from my mom randomly mentioning it once or twice randomly “by the way did you know your dad only has one kidney?!” Truly the extent of it.
Anonymous
09/30/2023 20:52
Subject: Baby with only 1 kidney
Our 14-year-old has only one, no issues with that whatsoever.
Anonymous
09/30/2023 20:49
Subject: Baby with only 1 kidney
My second son has only one (I had a though time with it found at 32 weeks after at 20 weeks they supposedly saw two). He is the light of my life, he is my last baby and is the cutest, most amazing, most brave I know. He’s like a tank in a good way and I imagine my life without him. We’re now at yearly visits since all is well. I had a hard time (think crying nonstop for days after giving birth) calling for that first ultrasound scheduling after he was born but that’s in the past. I adore him. See a MFM but they’ll probably be unphased.
Anonymous
09/29/2023 22:09
Subject: Baby with only 1 kidney
OP you need to see an MFM if you aren’t. And speak to a pediatric nephrologist before you think about terminating. Just because something is found wrong with your baby on U/S does not mean you jump to termination without doing some further research, for heaven’s sake. Plenty of issues are caught with during ultrasounds and so many children end up doing just fine!
For example, my son had kidney issues that were caught late in my 3rd trimester by my MFM. It freaked me out but I got a detailed ultrasound at CNMC and then had a great consult with their pediatric nephrologists. He had monitoring after birth and follow up ultrasounds and he was fine. Had I just relied on my Google research for his condition I would not have had the right context to understand the issue and would have freaked out unnecessarily over something relatively normal that just happens sometimes.
For example, my son had kidney issues that were caught late in my 3rd trimester by my MFM. It freaked me out but I got a detailed ultrasound at CNMC and then had a great consult with their pediatric nephrologists. He had monitoring after birth and follow up ultrasounds and he was fine. Had I just relied on my Google research for his condition I would not have had the right context to understand the issue and would have freaked out unnecessarily over something relatively normal that just happens sometimes.
Anonymous
09/29/2023 15:41
Subject: Baby with only 1 kidney
Anonymous wrote:Anonymous wrote: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.
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
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.
Anonymous
09/29/2023 12:16
Subject: Re:Baby with only 1 kidney
We have a 5 year old son born with one kidney. We were also scared when we found out, but it's been fine. We now see the dr. every other year as things were looking fine each year.
Anonymous
09/29/2023 12:07
Subject: Re:Baby with only 1 kidney
my grandfather had just one, no issues, lives to late 80s, throat cancer
Anonymous
09/29/2023 12:01
Subject: Baby with only 1 kidney
Anonymous wrote:My cousin has lived long very healthy life with just one.
As did my uncle who died at 77 from heart attack.
Anonymous
09/29/2023 11:58
Subject: Baby with only 1 kidney
Anonymous wrote: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.
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
Anonymous
09/29/2023 07:14
Subject: Baby with only 1 kidney
Re the association with other defects, if your baby is a girl, she should get an ultrasound after birth of her reproductive organs. Sometimes it corresponds with a uterine anomaly which is of no reproductive consequence but just good for her to know.
Anonymous
09/29/2023 07:13
Subject: Baby with only 1 kidney
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.
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.