I am currently 27 weeks pregnant with a baby boy who has one kidney that has an obstruction between the kidney and bladder causing it to swell (hydrephrenosis). When I was 20 weeks my doctor placed a shunt in the kidney to drain and hopefully save that remaining kidney. Unfortunately a few weeks have passed and we have not seen the kidney function properly, I have little to no amniotic fluid which means the kidney is not producing urine that would pass through the shunt into the amniotic sac. We won't have any idea of the level of functionality of the kidney until he is born and have been told he will be in the hospital after being born and treatment could range from medication to possibly dialysis and needing a transplant.
I am looking to hear some experiences of dealing with a baby with kidney issues and how it has been for the family. I have a toddler at home and worry about how this will effect him in anyway and how our life will change even though we are still in the dark about what will happen after he is born.
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JB0623
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I have a four year old with CKD stage 3. He was in the hospital for about a month before we took him home. He had a surgery and has had one other surgery before 2. He is stable right now. I think the best piece of advice I can give right now is that you need to stay in the moment. Neither you or even the doctors will know exactly how this will affect baby right now (they can give you worst case scenario and even how most people live with kidney disease). Don’t go too far into the future with worry and don’t blame yourself. Just love your baby and love your toddler. Kids are resilient and you have a community here even if it’s just you and me right now.
Thank you for sharing, I really appreciate it. It’s been a difficult situation, one I was not prepared to take on, but I am trying to take it day by day and hope for the best for my baby and my family. I wish I knew more of what to expect but unfortunately we’ve done every test (genetics, cordocentesis, mri) and nothing has given us much more knowledge, so at this point I am just going to have to wait and see what is to come. Thank you for the support, It’s nice to find a community of people who share similar situations or experiences.
Hi there. First off I just want to say, I know how scary and emotional it is to get this news at your ultrasound and my heart is with you, I hope you’re hanging in there ok.
I went to my 20 week ultrasound excited to find out the gender. The tech was quiet and then asked me “did your water break”.. at only 20 weeks, we knew then something was really wrong. The doctor came and said they couldn’t see any kidneys and sent me for a fetal MRI to confirm and suggested I reach out to a doctor running an experimental trial where they inject saline into the womb so the baby’s lungs will develop even if the kidneys do not.
The MRI showed two kidneys but they were extremely small, off the charts. As my pregnancy went on, the kidneys grew a tiny bit, enough to sustain enough fluid for my baby by the end.
They told me she’d go straight to the NICU for blood testing until it was clear which direction things were headed, which could be stable and headed home or dialysis.
They really can’t know for sure how kidneys will do after birth, it’s a very unique organ. We were at the US best children’s hospital for nephrology and all the experts said they’re constantly being surprised by how these babies do, both directions, some do way better than expected and some do worse than they expected.
I got to have a vaginal birth and she was doing well respiratory-wise due to the fluid increasing by the end. In the NICU they started right away on blood work every day. At first her creatinine was super high, like over 3 which is crazy for a newborn, but then it slowly started trending down after a few days. Those first few days when the creatinine was high we’re terrifying because if it had kept going up then we were headed for kidney failure.
After 9 days, her creatinine kept going down and she was peeing and pooping normally. I think it was down to around 1.5 when they let us take her home to continue outpatient labs. I was disappointed I hadn’t pushed the staff harder to let me breastfeed her which we never got back on track after that but of course just grateful she was ok.
She’s 18 months now. Her creatinine has been resting around 0.8 which is an adult number but her kidneys are enough for her right now to live a normal life. Things will most likely get more difficult the older she gets so we’re trying to just enjoy the normalcy for now. She is super tiny for her age and has never had a strong appetite, never took more than 4 oz of milk at a time and just picks at her food now but feeding therapy has helped. She is delayed in walking and other physical things but advanced in her speech. Otherwise she is happy and does all the normal things a toddler enjoys. We do blood work every 3 months for now.
Thank you for sharing your story, the unknown part of the situation has been probably the worst of it all, I’m happy to hear that you have had a more positive experience after giving birth. I look forward to learning more about what to expect when the baby arrives, I think not knowing whether his kidney will recover or fail has been hard, the doctors haven’t been able to give us an idea of what life will be like for the baby, it could be medication or it could be months in the hospital and with dialysis. But I obviously hope for some positivity and the ability to have some normalcy still, I’d love to have a vaginal birth and also breastfeed him, but only time will tell what things look like once he’s here.
totally, the uncertainty of what will happen is all-consuming, so hard to not sit there thinking about it 24/7. This may not work for everyone and I don’t intend to tell you how to feel or not feel, but for me, at a certain point I realized that since things could get very hard once she was born, I might as well try to soak up the pregnancy with her and feel all the kicks and take photos and take a lot of notice of what made her kick or move etc. to try to really have that positive time with her while I could. That felt like the only thing I could control anymore at that point, was my enjoyment of my time with her while pregnant. It probably sounds so sad but looking back I’m glad I have some positive memories and photos from then despite it all. Setting up a nursery or registry or not was a really tough decision as we had no idea if she’d be coming home. In the end, we did get a few things ready for her and really tried to be positive but it’s so hard.
Ill be praying for you and thinking of you and your little one.
Hi there! I have a 6-month-old with 2 dyplastic kidneys and is diagnosed with chronic/acute kidney disease. While pregnant, I was hospitalized for severe oligohydraminos and ended up having to be induced at 35 weeks. Since then we’ve been in and out of the hospital a lot, most admissions averaging 10-15 days. He will begin dialysis shortly and have a transplant within the next year. I have a 5 and 4 year old as well and it has definitely been a difficult transition being away from them quite often. Having a ton of family support helps a lot. Don’t hesitate to message me if you have any questions or just want to chat!
thank you for sharing, one of the things that scares me the most is being away from my toddler, but ultimately we won’t know what our situation will be until he is here, I appreciate you reaching out with support, it can be very isolating being in this situation so honestly being able to talk to others has been helpful.
I gave birth 5 weeks ago to a baby with bilateral renal hypodysplasia. It was not diagnosed prenatally so it was a pretty traumatic experience when 48 hours after giving birth to what we thought was a healthy child, we were told he was in renal failure and needed emergent dialysis. Similar to some of the others above, his creatinine was really high after he was born (it peaked around 3) but has since come down to around 0.9 and we were able to bring him home after 2 weeks in the nicu, not on dialysis. It has been rough, especially not knowing what the future will bring. It is so hard to not worry excessively about everything that is going wrong or will potentially go wrong and I am so sorry you are going through this. Although these 5 weeks have been extremely difficult, I do feel like God has a plan for our sweet boy and I think relying on our faith has been really helpful for me. God could have chosen anyone to be your boy's momma, but he chose you. You will be his biggest advocate and love him better than anyone else can no matter what.
I will keep you all in our prayers and feel free to message me if you want to talk.
thank you so much for your kind words and sharing your story. I’ve found that hearing from others like yourself has made me feel a lot less lonely in this situation. Only time will tell what the future will holds, but I truly hope for the best for my boy and will be there every step of the way for him. I’ll be praying for you and your family as well.
the hardest part for our family is not knowing what to prepare for. My son was born with PUV, same condition and by Gods grace he was diagnosed in about 24 hours, as nothing showed on earlier US and I had a normal home birth.
He was in NICU for 3 weeks and was released with a NG feeding tube and bladder catheter.
Today he is 3.5 and we are sitting having breakfast and life has evolved into our normal. He is a sweet and wonderful person. The first year half was a dizzy haze of stress.
One thing that helped was to know the kidneys and healing is very dynamic during the first few years. The potential for healing at whatever rate is always present.
Be your child’s advocate - a turning point for us was finding a hospital with specialists that truly understood his condition. We are at Cincinnati children’s if you are in the states.
you will get through this part. Go day by day and get as much cuddles and skin to skin as you can. Just be the mommy you always wanted to be. With some extra skills
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Suprapubic Catheter
15 and Stage 4 CKD
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