my unborn baby has so many problems with kidneys bladder and urethras. He has absent amniotic fluid. I’ve had steroids to help with his lungs. They say prognosis is not a good outcome. Dialysis, transplants etc. First thing will be to get him to breathe. Nothing was found on growth scan 4 weeks before hand ( only thing said was his bladder was full, was this the start of his problems that wasn’t followed up ) and now both damaged.
I feel so alone, will he pull through this when they deliver him.
Please help
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Slb1979
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Hi, I’m so sorry you are going through this. My son was born with urethra, kidney and bladder problems as well. At 20 weeks we knew there was a problem. My amniotic fluid also dropped. Have they said thickened posterior urethral valves? It’s a common birth defect. You are not alone. I also had steroids at 34 weeks. We made it to 36 weeks. Yes the same scary information was presented to me as well. But you know what? I have an amazing four year old right now. Does he have health problems? Yes. Will he always? yes. But he’s going to thrive and your baby will too because you are the mom! Momma you got this!
Hi Thankyou for your kind words. I really hope so. All they’ve said is he will need support breathing where he’s had no fluid. All was ok at the last scan 4 weeks ago. Only thing the woman said was his bladder was full and needed to wee. I also noticed on my scan report that fluid measurement was 4.1 all other scans were normal. They said about a tube or kidney has burst to release the urine pressure so he has fluid in the abdomen. I will attach report see what you think. They said poor prognosis for renal function for baby. I’m so scared I’m going to loose him.
I’m so sorry you’re going through this. My son’s kidney issues happened after birth, so I’m not qualified to give advice but wanted to offer support and let you know you’re not alone. Please keep us posted. I’ll be thinking of you.
This is the exact diagnosis that my son had. it sounds like there is a blockage where it’s making your baby have to work hard to pee. The urine backs up into the kidneys and thats why your amniotic fluid dropped. The body is amazing and your baby already has protected one of its kidney by finding a way to force that urine out and that’s why your fluid came back up. The ureters that go from the kidneys to the bladder have gotten bigger because there’s been pressure there and the urine has had no where to go. This causes kidney damage. This all sounds scary I know. Reading your report made me happy for you in a couple of ways. They are making sure that you deliver in a hospital that already has providers that know what’s going on. A pediatric urologist will see your baby the day he is born and plans will be made to help your baby pee so that the kidneys and bladder will stop having to work so hard. You will have a team of urology, nephrology and other doctors that are waiting for the safe arrival of your baby. You already had steroids as did I which will help baby’s lungs and my baby needed some help with breathing but eventually he didn’t need that help anymore. I dont want to overwhelm you with too much information or guessing as to what might happen. The best advice I can give is to not look too far into the future. Remain in the present. Listen to the doctor’s and know that they have to say what the worst case scenario might be but they don’t have a crystal ball. Trust your mama intuition and just do what mama’s do best. Love your baby and know that you have a stranger’s support and prayers from the US! You can reach out anytime. I will be here.
Thankyou so much! ❤️ So scared of what’s to come and it’s getting closer. 2 weeks to induce date unless I’m booked for c section which I will know more tuesday depending on if he’s managed to turn x
Hi, I have an 8 year old with very different issues but wanted to send you a hug. I’m sorry you are facing such a stressful situation. I hope you have a loving family and support to wrap you and your beautiful baby in love for the journey ahead. I wonder if your OB might have recommendations for a local support group where there might be another mom you could meet? I am a pediatrician in the USA. I don’t want to give you any medical information or advice, because this kidney situation is very complex and I’m not your doctor. However, I am a parent of a child with a chronic and difficult to treat kidney condition. It is a marathon, with no obvious endpoint. Whatever support system you can gather now and however you can simplify your life now will help you in your journey ahead. Sending you support and encouragement.
PS I found getting off social media very good for me. I have had significant grief/sadness over my daughter’s issues (she has autism, developmental delays in addition to kidney disease—unrelated, just bad luck) & the less time I look at people’s curated pictures of their unaffected kids, the better I am. Also, a big reason I became a pediatrician is because kids are incredibly resilient and will often get through medical issues that would flatten an adult. My daughter has been in the ICU, had multiple procedures needing anesthesia, etc—-she works incredibly hard to do what comes easily to other kids. Yet she is the happiest person in our family of 4. She will shriek with delight at a bird singing or a goose with its goslings. She really finds and brings joy to so many. We were at a store once & she began shrieking “doggie! Doggie!” (A customer had her dog with her). The lady with the dog came up to me to say she’d been having a really hard day & my daughter’s reaction to her dog had literally brightened her whole month. I hope this long rambling response helps a little.
I have a 3 year old with posterior urethral valve condition too, and the kidney damage. I did not know until birth as everything appeared normal and healthy vitals. Only mamas of complex medical babies know the shock fear and pain. But you will get through this, mama strength is a gift that will carry you through this. Just take each day as it comes.
Advice I would give myself:
Arrange help from friends family neighbors….food gift cards cleaning help etc.
no matter how many tubes and devices he may or may not be on, hold hold hold and snuggle him tightly. He needs your love so much!
Thankyou so much. I’m so scared of what’s to come. Can I ask what extent the kidney damage was? Are they on dialysis or anything. I’ve been told his bladder ruptured causing urine in his abdomen which is pressing on the left side of his stomach and diaphragm. I feel so helpless. Xx
the hardest part of any medical condition for littles is the feeling of helplessness. It is a tough one. Just know you will ge presented with worst case scenario the first few weeks- dialysis and kidney transplant. No one knows yet how this will unfold.
I had to remind myself after my son born that I was not the victim. It was my beautiful little boy who had had tubes and surgery and a lot of unknowns and several medications. It was my fear and helplessness and lack of control. I was not in control.
My son was born with posterior urethral valves that caused swelling of kidneys (grade 4 and 5) hydronephrosis. Currently he is in stage 3 kidney disease. The best thing our family did was find a SPECIALIST for PUV. We went to Cincinnatti children’s hospital which has a dedicated PUV clinic. The care I got there saved my sons life and gave me home care that put me back in control of caring for my son instead of just waiting around for another infection of impending kidney failure.
I use a catheter on him throughout the day and a nighttime catheter to drain his urine.
Your son will have his own story with you. Just know you can learn anything and you can do and you will do things that seem impossible now.
we also go to cincy for care. Let me know if you ever want to connect. Would love to talk more since it sounds like our kiddos are on a similar journey
We live in Kentucky and travel to CCH every three months. My son is four now and is ckd stage 3b. Labwork and ultrasounds to keep on track. We cathed for a year just at night. I always second guess myself about things. Am I doing all of the right things? They wanted us to do growth hormone replacement but we want my son to decide when he’s a little older.
I know the feeling! Some days I just have remind myself I’m doing everything I can and the rest is up to God. I also make sure I love and treat him like a little boy, not someone who needs to be “fixed”.
Did you use a foley? I m having a tough time working up to that, I’ve done it a few times but the whole balloon thing freaks me out!
We did. I actually am an RN so I think God knew what he was doing when He gave me my son. I don’t work as a nurse anymore but I’m thankful for all of the knowledge.
Hello- I went through the exact same thing. Learned at my 20 week ultrasound that there was a problem. My son had posterior urethral Valves, kidney reflux, and bladder problems. I had very low amniotic fluid fluid. They gave steroids to develop lungs and did a procedure inutero to empty his bladder, but he pulled out the catheter. Delivered at 36 weeks. When he was born he was on a vent for a short time, and we were told that he needed to start dialysis in order to survive. He started dialysis at 8 days old and had a feeding tube inserted. The posterior urethral valves were fixed immediately, but the blockage had caused to much damage. He continued on dialysis until he was 3 1/2 years old and big enough for a transplant. This was 15 years ago. He is now a fairly health, thriving young man that you would not know anything was going on with him unless you were in our inner circle. When he was born they gave us the option to let nature take its course (which was never an option for us). We had one of his doctor’s, his urologist, who was our biggest cheerleader and he told us that this was just a bump in the road and he would get a new kidney, and grow up like the rest of his peers and he was right. We still see this doctor today. I wish more were like him. I know this is scary, but have faith and stay strong for you and your son. You can make it through whatever the outcome. I wish you all well. You got this!!!
thank you for sharing your family’s journey. My son is 3.5 and nephrologist told us that around 7 he’ll likely need a transplant. I do fear this but hearing stories like yours gives me so much hope.
As a pediatrician, and a mom of a child with a different kidney issue, I want to thank you for posting your story. I love caring for kids because they continue to thrive and be kids/teens despite incredible challenges. I’m sure your family has weathered many challenges. Our daughter’s pediatric nephrologist trained at Cincinnati and is outstanding. I am so glad your son is living a great life. Thank you for making my day 💕💕
Hi all I’m sorry I didn’t update. He was born on the 9th June. They drained 500mls of urine from his tummy while still inside me the night before., then another 300 the day he was born. He only needed 30% oxygen and was off the breathing tube 3days later. He lost alot of weight he went from 6lb 5 birth weight to 4lb 2 in 6days because he wasn’t feeding. They had to stabilise his sodium levels as he wasn’t tolerating feeds. He had a tummy drain that was in for 2weeks as well as a catheter. Once they stabilised him and he started feeds they removed the PUV blockage. The hole in his kidney healed and his blood levels normalised. The doctors were amazed how well he’d done in 2 weeks. For the last week he was on the children’s kidney ward to eat and gain weight. He had a bladder function test that was normal and was discharged at 3 weeks. He’s due to go back for another cystoscopy in the next 4 weeks and follow up. Fingers crossed all is still ok. He’s doing so well. Here are pics of when born to now
Awwwwww, congratulations! He is absolutely lovely!!!! He looks wonderful!!!!!! I’m so excited to see your update! Best wishes for you and your adorable little guy!
Thankyou all for your kind words. Thought I’d update. We are now a year old. Only one kidney is working and the other will just keep shrinking. We had a time when calcium levels were high so had to reduce his formula intake. He continues to see nephrologist, urologist regularly for scans, blood & urine tests. He still has the reflux but is on regular antibiotics. Did anyone have to watch what their child could eat or drink? At the moment they say he can eat as normal just a well balanced diet. I’m always checking the salt content of things
Awe. Thank you for the update. He is a handsome little man. I am glad that everything is going well. At the beginning with my son we did not have to watch what he ate because Qua’mel would not eat. Due to his low appetite we decided to have a g-tube. However now that he is eating will have watch his diet.
So glad to see this update! He is so handsome and I’m glad to hear he’s doing well. We watch our son’s sodium intake, too. He also only has 1 functional kidney. Keep us posted!
Beautiful! Love these updates! My five year old is on a special formula still. He has an oral aversion so we really have to encourage him to eat. He gets labwork every three months but so far has no restrictions for what he can eat.
Oh wow bless him. We are still giving Aptamil 1 but had to reduce the bottles as he was having 5 6oz. Now he only has 3 but still same amount of bottles as it’s watered down because he’s really funny with drinking water and his calcium was high at one point and had stone formation. I struggle with what give him to eat, he likes to eat but have to like you encourage him. He’s not keen on veg. But he eats fruit.
We had scan on Friday and couldn’t see any stones 🤞. Seeing urologist this week and waiting for follow up with nephrologist
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15 and Stage 4 CKD
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