Heather Nelson, age 23, had a very stressful pregnancy, chasing after her two-year-old daughter and worrying about keeping her unborn baby as healthy as possible. Worse yet, she wasn’t able to have the fun of planning for the new baby to come home and buy new baby clothes. Nelson was facing every mothers' worst nightmare, worrying about how she is going to explain to her young daughter why her new baby isn’t coming home and planning her unborn child’s funeral. 

In the fifth month of her pregnancy, Nelson was told that her baby was going to be born without kidneys—a rare and fatal condition known as Potter’s Syndrome. “Every time I hear of another baby being diagnosed with Potter’s Syndrome it just breaks my heart. But I know that God chose each one of us mothers, we are the Earth’s angels, chosen to carry these special babies to the arms of Jesus,” Nelson tells SciJourner.

Fetuses afflicted with Potter’s Syndrome lack one or both kidneys before birth, according to potterssyndrome.org, a website run by a mother who lost a child to the syndrome. Having your kidneys in the womb is very important, because they are fundamental for the production of amniotic fluid. The amniotic fluids expand the womb around the embryo and help it form into a fetus. Without the amniotic fluid; the womb remains petite, thus leaving the baby’s lungs undeveloped.

Most babies with Potter’s Syndrome are stillborn, but the ones that aren’t, usually live for one or two days after birth due to undeveloped lungs making it hard for the baby to breathe, according to potterssyndrome.org and the Minnesota Department of Health website.  

Males have a higher chance of getting Potter’s Syndrome because they have a higher rate of another problem, Eagle-Barrett Syndrome—poor development of the abdominal muscles, causing the skin of the belly to wrinkle, according to emedicine.medscape.com (registration required), a medical reference site run by webmd.com.

Potter’s Syndrome is not a single problem. There are four different types of the syndrome now recognized, with different causes, according to potterssyndrome.org.  

There is not much known about the cause of the syndrome. Scientists suspect that it may be linked to the formation of the gonads—testes in males and ovaries in females. The tissue that gives rise to the gonads and the kidneys is the same for females and males. In fetuses, the testes and kidneys form at the same time but the ovaries form after the kidneys, according to potterssyndrome.org.

The physical features of babies that are diagnosed with Potter's Syndrome are flattened noses, recessed chins, low-set ears, Eagle-Barrett Syndrome, stretchy skin and limb anomalies, says emedicine.medline.com. 

“I saw a daddy out on a Valentines ‘date’ with his young daughter back in February, it was so sweet,” recalls Nelson. “But it broke my heart. That could‘ve been me, I could have taken Rhyan out on a mommy and son ‘date’ for Valentines. I may never get to take my son out for Valentines Day, but I do have the privilege of saying my Valentine this year is an angel…”

 

 

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80 COMMENTS

  1. Rachal,
    Being Rhyan’s grandmother, I justed wanted to thank you for getting this out to your readers, and making the awareness of Potters Syndrom more widely spread.

  2. What an eye-opening article, well-written, honest and informative. My thanks to everyone involved for sharing this emotional event to educate the rest of us.

  3. Thanks forthis. I lost a baby boy due to Potter’s after only 40 minutes of life. This was over 14 years ago. Though we did have a healthy baby girl one year later, we did not have any more children out of fear. We are now trying to conceive again and I am so scared of this awful syndrome’s reoccurence.

  4. On November 13, 2009 I gave birth to an angel named Leah Renee who was "born sleeping". I am happy you shared your story as I do with my own. I may be expecting and am extremely tense about what may lie ahead because this was the hardest thing for my family and I to go though and I do not want to put them through it again. My prayers are with you continually. Please keep us in your. Blessings, Kairis

  5. I am only 18 years old, when i was 17 i learned i was pregnant and in my 5th month they diagnosed my little angel with Potters syndrome, it was the hardest decision of my life but i carried my baby as long as my body would let me. I went into labor at 34 weeks and my baby Aubrey Mae was stillborn but i am so grateful i gave my baby every chance i could. I am so scared that this happened when i am so young, what if i can never have children..i am fearful of this happening again to me

  6. I gave birth to my little angel Johnathan Anthony almost 15 years ago when i was only 17 years old. I found out when i was about 5 months pregnant that he wasn’t going to make it. We didn’t know until after he was born that he had Potters Syndrome. He only lived for 1 hour an 45 minutes. I’m now almost 3 months pregnant and i pray to god everyday this won’t happen again. What are the chances of that happening again?

    • I aske dmy doctor what my chances were of having another baby with Potter’s after I had my son in March of 2008. She said that since I have no kidney issues that my chances would be that same as getting struck twice by lightning. I also work in a high risk labor and delivery hospital and asked the Perinatologist (after I saw a patient having her 2nd potter’s baby) and they said that it is more common to repeat in mothers that have known kiddney issues, but is still very rare. Good luck woth your pregnancy!!:smile

    • Forgot to mention that Alexander my son that I lost is now a big brother of a healthy beautiful sister who will be 3 at the end of April!

  7. I am so sorry for all moms and dads who have lost their angels to Potters Syndrom….my story about Molly MacKenzie had a different ending…she is alive and graduating High School in six weeks….although she has miminual health problems…resiptory infections, immune problems….took her ten years to do a cartwheel…she was on varsity cheer for three years, played community soccer…she had to be home-schooled for six years because of missing too much school…my point is this..even though she was given less than 1% chance of survival….and I was told repeatedly to abort…so glad we chose not too…see still doesnt realize what a miracle she is but we do and someday she will to…she wants to be a neo-natal nurse….

  8. Hi there, Is very hard to hear stories like this, Because i know what all this feels like and its just horrible. I am 21 years old , and my Husband and I got married on June 2011. We found out we were expecting a baby a month after. We were the happies couple. Sadly on Nov 22, the Dr.s couldnt find the baby’ s kidneys. They said it was unexplainable. They give me the choice of abortoin. It breaked my hear in million pieces, i couldnt believe what they were telling me.They said it was a boy. I refused terminate the pregnancy, because my baby was alive! He would constantly move everyday. I would sing to him, talk to him and he would always move as if he was letting me know that he loved me. Few Months passed and he was born prematurely at 32 weeks. He was 4.4 oz very small. I had hope that somehow, he would make it. He passed away 4short hrs later. Our hearts were torned up…I wanted to die at that moment. Its been 3 months and i still cry. I MISS HIM. I dont understand why many woman out there have healthy babies and they dont want them, they beat them or abandon them. Some also abort. GOD has giving me the strenght i need to pass this trial. I would never understand why this had to happen to me, but I do know that God has a purpose for eveyone and if someone else out there is going through this, just know that We are blessed. God has send us a little angel and we should take care of his for long as we can. HE only knows why he does things, and someday He will let us know why He permited us to experience this.
    R.I.P My little warrior,
    Sammuel Ocampo
    March 6, 2012

  9. Ten years ago on the 16 July I gave birth to Heather ann, she weighed 4.5lbs with lovely dark hair and I thought she was beautiful. But sadly she was another victim of this cruel syndrome. I was told by the medics that it would be better to terminate her when I found out at 20 weeks, but no-one was going to tell me to kill my baby so I carried on with the pregnancy. I knew that decision would the best thing as I felt every kick and got to know my baby every minute she was inside me and I still have no regrets. At 35 weeks I went into labour naturally and with the help of an epidural and my marvellous midwife I gave birth to my angel, she was alive and we were blessed for 20 minutes to enjoy with great sadness her fleeting life, then she passed away in my arms looking up at me. So peacefully and without pain. It has taken me 10 years to be able to write so freely about my Potters Baby, the pain never goes away, I’m crying as I’m typing this, but in time you learn to accept and live a happy life. I have since had a lovely baby boy, who has just turned 8 so life does become easier, you just never forget!! I feel for every woman that has had a potters baby and every man that has to share that sadness, but please believe me when I say you are not alone. My thoughts are with you all!! Thankyou for reading my story. Xx

    • Im sorry to hear about your daughter. My daugher had a potters baby in 2011 . He was alive for 2hrs 42 min. It was her first baby . Well she just got preg for the 2nd time and well weds was her 18 week ultrasound and she has another potters baby . She has been so very sick the whole time I was just curios were you really sick too? Sorry again for your loose.

      • I had a Potters baby in 2010 and and I was diagnosed with extreme morning sickness. maybe there is some kind of a connection.

  10. On May 5th, 2012 i gave birth to our beautiful little boy, JD. I was 5 months pregnant. He was absolutely beautiful and looked just like his big sister. It was the saddest day we’ve ever experienced and would have never imagined this happening. We all have friends and family members who have pregnancy with no problems or issues, and you wonder "why did this happen to me?" "What did i do wrong?" God choose this path for our babies who are now angels and i am just so thankful we got to meet and hold and kiss him. He is our angel watching over us. Hugs and kisses to all the mommies who have gone through this. We are all so very strong and god will bless us again. xoxo

  11. during scanning at the gestational age of 20 weeks,my wife was diagnoised with potter syndorme.doctor told us to drop the baby.as we had no choice we dropped her.i am sorry to all parents with potter syndrome.hope this will not repeat again.

  12. I am very sorry to hear of each story. Its so unfortunate that this many people have to experience. About one week ago, when i reached 20 weeks, i learned of Potters syndrom and that my baby was diagnosed with it. She also has Renal Agenesis (which is basically the same thing). And i also have Placenta Previa (my placenta is COMPLETELY blocking my cervix). Its so hard to know that she is completely healthy in my tummy but has no chance to live outside of me. As soon as it is safe to have more children, my husband and I will be trying again. God has already blessed us with two other children, so i suppose he wants her up in heaven with him. Its very hard to cope with Potters Syndrome and i am so sorry about other mothers who have already went through this. I have about 11 more weeks with my wonderful daughter. Good luck to everybody.

  13. In 1975 I gave birth to a baby boy, breech, small, blue and with the cord wrapped around his neck. The doctor and nurse rushed the baby to the other side of the room and worked feverishly. I KNEW something was wrong because I had two other, healthy births, both large babies delivered naturally with no anesthetic and very easily, and this wasn’t right. There was no cry. As I watched the second hand on the clock go around I asked the nurse working on my afterbirth expulsion if the baby was going to be alright , and she looked at me sadly and said she didn’t know. By that time four minutes had gone by and I KNEW I could not raise a brain damaged child. It isn’t in me. I got up on my elbows and pleaded and pleaded with the doctor to stop working on him and let the baby die! Sounds harsh, but I was the one whose life was to be affected. He did die a few minutes later, but it was a couple of days before we found out about the Potters Syndrome. I was told that the doctor had to look it up in the medical library because it was so rare. We had no funeral, and I don’t know what happened to the little body. Later, when organ transplants became more common I was regretful that I hadn’t offered whatever could be used for other, healthier babies. Someone, though, rememinded me that it wasn’t done in 1975, at least not regularly and not with infants. I was anxious to get pregnant again, and I did. My lovely daughter is turning 35 this year.
    I’m 65 now and losing the baby to potters syndrome is only ONE of the challenges I have met and overcome in my life. I’ve had great sadnesses but also great joys. And, who knows, maybe the joys really ARE made more joyful because of the comparison to the sorrows. I am sure that there was some lesson that I needed to learn by going through that experience. I hope I learned what I was meant to.

  14. my fiancee and i got the diagnosis yesterday, we still have the hardest decision ever ahead of us, we arent sure if we can handle hoping for the best and dealing with the pain of losing our baby anyways, something is telling us to cut it short and deal with the pain now. but then theres the side that asks if it would be immoral or am i cutting the babys suffering short? im so torn and destroyed right now i havent even got the beginning of an idea how to even begin dealing with this

    • Wow…reading your words just brought me back to the day we got our diagnosis and had to make the same choices. The screaming in my head didnt end for days……. Please do not worry about the immorality of any decision. Your baby is going to be an angel with God regardless. Sometimes being able to have some control in a totally out of control situation is the best thing for you. For me…I decided that I wanted my baby to be able to feel my touch before he died. I had a scheduled early delivery and was able to have just that. I had 23 unforgetable minutes with my son. His death still shreds me. He had BRA….there was no hope for him. I was blessed to be able to have another son a few years later, and I am convinced that my angel in heaven made sure he was healthy. I wish for you both peace….and permissions and strength to make whatever choices work for YOU and nobody else. This is your baby. From a Potter’s Mom…my arms are wrapped around you both.

    • It doesnt look good…depending on what kind of Potters Syndrome your baby has been diagnosed with. I lost son to PS in 1999 (he had BRA). I would have traded the world to save him…..but even with amniotic fluid replacement there are no gaurentees:sad: My heart goes out to you….I will pray you have a better outcome than I did.

  15. I had a beautiful baby boy 24.02 1984 born at 34 weeks breached emergency cesarin with potter’s syndrome my 1st baby,wow!I can’t tell you the pain I went thru,the doctors told me there was only 5 known in Australia at that time,this is the first time ever I have heard more,I would love to hear all your story’s.xx

    • Gail my baby boy Brax was stillborn on tuesday the 22nd of jan this year. He had potters syndrome. I found out at my 20 week scan that he wouldnt survive. This is the hardest thing I have ever had to deal with. I ncry everyday. I wish this upon no one and wish that we didnt go through this.

  16. We are sisters of the same fate. And I am with you in spirit. I was not able to see my baby boy breathe as he died a couple hours before I gave birth in October 2010. I found out his condition when I was about 24 weeks and continued to carry him for the full gestation. Just as many other mothers who have lost their baby to this mysterious affliction, we are amazingly strong, faithful, and understanding women. And must be there for each other and those that come after us to ensure that this trauma is not trivialized, or hinders our faith in ourselves as mothers. I love you all!!

    • my grandson was born with potters he lived for 19 mins change is needs please check out the website and sign the E-petition suppot us in wanting change

  17. My daughter would have been 27 this year. She also was born with Potters. I had never heard of it until they did her autopsy. She lived for 18 hours and 36 minutes and died in my arms.

    • My daughter wd also hve hd her 27th b’day this yr she was stillborn july 4th 1986. I also hd never heard of potters. This is my 1st time actually searching for it online

  18. Someone please help me. I was told this past friday my baby doesnt have her kidneys and will not survive.I cry all day.can someone please help me.im so sad. I cry and pray all day.im 20 wks. My babys name is Priscilla.

  19. Last Nov I went to the emergency room to see why I was having Braxton hicks contractions and they told me my baby did not have a developed bladder. After going to a specialist we found out our baby indeed had a bladder but the kidneys were blocked… I had 0% amniotic fluid my baby could not move in the womb so we chose to terminate so he didn’t have to suffer. Two days before thanksgiving I was checking into the hospital to be induced with my now 19 week fetus. It was the hardest thing I could ever imagine going through. It would have been my husband and my first child together so that made it that much harder. I was able to hold him after he past and the hospital put him on clothes and let us take pictures. It was kind of closure for us that he was no longer suffering. But now I am 16 weeks pregnant and I am worried sick that in 2 weeks when I think ill be going to get good news on gender I will be reliving this nightmare all over again! I will pray for u all for strength and healing all I ask is for prayers for the one I am carrying now.

    • My prayers are with each of you, I had a son, Titus, born with Potter’s Syndrome in October 1989. Titus lived a little over two hours after being born emergency C-section, he passed in my arms. Titus was my third child (first son), after Titus’s death, I had a daughter that was born with only one kidney and one ovary then a perfectly healthy son. The pain of his death has never gotten any easier, still lots of tears and down days.

  20. Our son was born with BRA as well and was sleeping. I asked if they could do fluid replacement and once he was born if the could do kidney transplants. The answer to those questions was no. Based on that, and the fact that we were told that carrying to term could cause uterus problems later on with future pregnancies, we decided to induce early at 21 weeks. We found out his diagnosis at 18 weeks. Those three weeks were agonizing and to this day I still cry. It has been a year and a half since we said goodbye and hello in a matter of seconds! I feel so sorry for whomever has to go through this, I wouldn’t wish it on my worst enemy. If you are currently going through this do everything and anything at birth, take pictures, bath, hold them, dress them, get footprints, and anything else that you might feel uncomfortable doing. You will not regret it! If the pictures and keepsakes are too hard to look at now, you can always look at them later!

  21. Ive just entered into my second trimester with a 12 week scan showing suspected Potters Syndrome, i have 2 healthy child already and am praying to god they are wrong. It doesnt look good though my baby already has no fluid what so ever . After reading uop on this i find this to be one of the most heart breaking situation i have ever had to face in life and im unsure of what to do 🙁

  22. We have found out today at 20wk scan our baby has potters (BRA) no waters round baby ect. Im distraught. Why us ect. Thought it was a rare condition but there seems so many babies that have it 🙁

    • Just read about a young congresswoman wiiho gave birth to a healthy baby girl that was dignosed with Potters syndrome. a doctor from john hopkins did an experimental procedure and the baby went home with healthy lungs and will have dialysis until she is one year old when she will have a kidney transplant. the prognosis is excellent. I hope this info might be helpful to you. God bless you

  23. My heart goes out to all of you who has lost your baby or if your baby has potters syndrome. I just lost my baby boy Sept. 9, never even heard of this until my baby boy was born and was in nicu.
    Durning my pregnancy doctor’s told me my baby had enlarged kidneys and no abdominal fluid they were given me injections until my 6 months said they had to stop to risky for the baby. Doctors told me middle of pregnancy if I wanted to terminate things didn’t look good, and baby had little chance of survival due to enlarged kidneys, low lung development . But said I wanted to continue, I had faith and prayed. Doctors didn’t think ill make it to 26 wks, but I made it to 34 wks. My baby boy was 4 lbs 3 ounces and 17 inches long. Right away was taken n put in nicu. Later doctor told me they found potter syndrome in my baby and that it was very fatal. When I was able to see my baby their was so many wires all over his little body and in his nose a machine was helping him breath, I knew he was in soo much pain, I didn’t want my baby suffering. Took him off the machines and he past in my arms. To this day it kills me. I wish their was a way to
    prevent this. Soo many questions unanswered.
    My sweet little baby ANGEL is now looking down on me and I miss him each and everyday. 😥

  24. On August 25 i gave birth to DaJour Bernard Spencer,at 20 weeks i received the news that he had potters and he had a 4% chance of survival and terminating a pregnancy was the best thing for us but his father and i refused to give up on him and felt that his life ending would be gods decision not mans. God blesssed us with him for 36 weeks inside me and 10hours of life on the outside and i am very greatful

  25. I too lost my first son Zachary to Potter’s Syndrome in 1992 but I had no idea. I was told after 2 ultrasounds that the baby was perfectly healthy just a little on the small side. Was also told he was a girl!He was born at 35 weeks and lived 5 hours! It was horrible and I always wonder what he would be doing today!!God did bless me with 3 other healthy boys!! Prayers and love to all of you that have been through the same terrible thing!

  26. I recently lost my son Zaden to Potters Syndrome. We lost him on April 29,2014. He managed to live for an hour and 22 minutes. This deadly heartbreaking syndrome has definitely changed our lives forever.

  27. Hello July 18, 2013 I lost my last son to Potter’s Syndrome when I was 5 month’s We had found out that my baby boy had it. They asked if I would like to give birth that same day. I said no if hes still willing to fight inside me, Im in it till the end with him. I was 38weeks when he passed away inside me. No words can explain the feeling knowing that I would never get to take him to his first day pf school or see him graduate. When I give birth to him I had my tubes tide. I visit him everyday. Hes was the youngest of 3 kids I give birth too. Hes older sister asks why did he have to leave, all I tell her is hes an angel he’ll always be with you.

  28. hi l have been trying to find what happen to my son and daughter,as when l loss them,in 1998,1999,i dont think the doctor knew what was wrong,as l have been looking to find out what was wrong with them,they both had kidneys,problems and my son had water on the brain,as l terminated him,at 23 weeks,as the doctors said he wont live,my daughter at 12 weeks had the same as my son,and l knew lcouldnt go through that all over again,lm just hoping now l have found out what they both had,because fro yrs no one knew,l think both my kids have got this,so l thank you for me finding this,l never when on to have anymore kids and at the age of 38,not having them hurts like hell,and so does my ex,now he wants kids,he has gone off to have them,maybe we will see,as l have read in this,that he may not.to all the parents going through this or have done,you never forget,but in time you learn to leave with it,god bless you all

  29. I just had my baby boy Michael Curtis Webb, he was born on Sept 14, 2014. He had no fluid around him one kidney was enlarged and full of cysts and the other kidney was deformed and.very sma and had cysts as well… They both were nonfunctional. The drs told us he may come out deformed, and there.was a high risk that he’d be still born. They told us how alot of women chose termination, but I.strongly felt that was not the right decision for us or him. I carried him until 38 weeks and gave birth naturally with no pain medication. I held him in my arms the whole time God chose to let him spend with us which was 1hr and 3min! If I had.to go through it all over again I would just so he could enter into heaven.for eternaty!!:’) Right after he was born we did a baby dedication 🙂 we even got blessed with hearing his little cry. I hope someone can find peace and.encouragment through my story amd it brings them a little light <3

  30. My brother and sister-in-law had been trying for a baby for over five years. She finally got pregnant and they found out their son has Potter’s Syndrome. He has made it the entire pregnancy so far and will be born by c-section January 19th. We have no idea how long we will have to see him but I know that he will be loved no matter what. It is sad but our hope is in Christ and we know that there is a plan for everything.

  31. I lost my first son Collin Ray Corner to Potter’s Syndrome. I knew at 11 weeks of gestiation that there was something wrong with my little angel, I carried him until 34 1/2 weeks when my b/p began to rise and started to spill protein in my urine. I tried to save him from the time of the first ultrasound… My husband and I went for days of loooong testing and also had 6 bladder taps done… this is where (if u dont know) they do like an amniocentesis with the very large needle to try to save his kidneys.. My heart is ver heavy and sad but I know my baby boy is watching over me everyday! I am blessed with a little boy that I got pregnant with 6 months after losing Collin. He lived 2 hours and 7 minutes after bith and passed in my husbands arms….. He wa absolutely precious and no one knows what it is like to have to bury their kid. I know you read about stories of people hurting their children.. I just dont know how anyone could do that…. I miss my baby everyday but I kniow he is in alot better place….. <3

  32. 18 weeks, we were diagnosed with renal agenesis. Life, as we imagined it, changed completely. For those of you who chose to go through to full term how did you handle that emotionally knowing the baby’s lungs may be compressed and that he was growing but would not live past a few hours? We have been advised to terminate and my feeling is that I’d rather not have my baby boy suffer – I’d rather not have his lungs compressed or deformities due to him being in such a tiny little space. We are torn and devastated and cannot think straight. I love this baby more than anything and I pray for strength and guidance. I would do anything to change his situation. But the best I can do is prevent him from suffering. For those of you willing to share, I wonder how you came to terms with your diagnosis and what made you decide to keep long term or terminate?

    • I found out when I was 20 weeks pregnanot in May 2009 that my baby girl had no kidneys. The doctors gave us two choices. I am a nurse and I knew the risk of continuing the pregnancy but I understood the pain that my little girl was going through not having room to grow. For myself and my husband we chose to have my labor induced at 20 weeks. I could not bring myself to carry to term because of the pain I knew my baby would suffer from. everyone makes their own decision and what is best for them.

    • at 21 weeks at our routine ultrasound we found out my baby had potters syndrome. we got a second opinion at another hospital and it was confirmed she had no kidney’s or if she had one at all it was very small and non functioning. I decided to end the pregnancy becuase I had a 5 year old daughter who I couldn’t allow to go on thinking her sister was going to be born healthy and happy. I also, couldn’t go on thinking that my little girl could suffer as doctors couldn’t tell me she wouldn’t be in pain or when she was born if she would be still born or suffocate. My now ex husbands family didn’t really approve it was THE hardest decision of my life. On the 3rd of July it will be 3 year since I made that horrible choice and while I don’t think I would have made any other choice it still hurts like hell.

      • I found out January 25th 2016 my baby was going to be born with potters syndrome she didn’t have any fluid what so ever around her she couldn’t even move. They sent me to a specialist who confirmed it and told her they’ve never seen a baby so tightly together they couldn’t even tell her gender. We made the choice to be induced because my doctor told me she would be in pain the bigger she got because of the fact she couldn’t move. January 29th 2016 just a few days ago our baby girl was born she lived a couple minutes but she will forever be in our hearts. I also had family members question our choice and tell us we killed our baby. People don’t realize how serious PS is they just think medication can fix everything.

    • My husband and I found out at 20 weeks. We both knew our feelings towards ending any pregnancy. We had been asked twice if we wanted to. We said we couldn’t both times. God’s hands were on us. It was by his grace we had been given life. We had no idea what the outcome would be until it happened. Yes, we were scared but with the grace and love of God and a supportive family. I delivered our baby boy via c-section and got a beautiful 10 hours with him. I wouldn’t take it back for anything in the world. I got to meet him, hold him, love him, see his eyes open, hear his cries, and my husband even saw him blow spit bubbles, we held his little hands. It was late night when he passed and I was thankful it was in a quiet room when it did. This was little over a month ago. 8-21-15 His life has changed more than just ours. Sweet little Drexel Lee. #DrexelLeeBoggs

    • We found out our little boy at 20 weeks would have no Kidneys or Bladder and possibly had a heart defect. We had previously had a misscarriage. I gave birth via c-section on 8-21-15 to Drexel Lee. He was loved by us all as soon as he came into this world by the grace of God we got to meet him. My dream is to connect with as many moms who have lost babies to potters syndrome and work towards getting awareness out there about it. We had no idea it even existed even when we found out about his kidneys. You can find us at Potters Syndrome Awareness in memory of Drexel Lee Boggs on facebook.

    • Sorry to hear about your baby boy, we choose the induced miscarriage aswell for the same reasons as yourself we were told as I had no amniotic fluid at all often the baby would suffer a lot and normally passes away before full term due to the conditions and I didn’t want me baby to suffer anymore just so I could hold onto him for longer, we was completely devastated and too be honest almost a year on we still are I think things change when you learn things won’t get better you just accept it, I will never forget how perfect my little boy looked and his perfect hands fingers toes and he will always be part of our family xxx

  33. My little brother was born with this, but he looked so healthy. He looked like there was nothing wrong with him. He was born on Sep. 9, 2010. We knew something was wrong when one of the doctors was looking at the sonagram when we found out the sex of the baby, but we were not informed of what was wrong until later. My mom gave me the choice to be there when he was born or go to school. I did choose to go to school because I couldn’t be there because I had a bad feeling. That feeling was right, my brother was born by c-section and then he was rushed to children’s mercy. He died at most 9 times on his way there. My grandma had taken me out of school, when I got to the room with my mom I was so confused why wasn’t my brother there? Then she told me, I made my grandma take me to see him. I did not leave his side, my brother meant everything to me. I could not hold him.. But I was able to have him hold my finger. I sang to my brother and prayed. I sang you are my sunshine to him and he held on to my finger and then he opened his eyes I was the only one he had opened his eyes for. My brother lived a little over 24 hours. My mom chose to pull the plug and I did not get to hold him for long because the father was and is a jerk and took him from me but the moment I got him back, he took his last breath and i bawled. I would never wish what happened on anyone. I love him and I’m sorry for anyone who has to go through this..

  34. I was 14 weeks when i found out my son aidyn had potters syndrome i was 17 years old he was my first child i was beyond scared doctors tried to convince me to abort and said it wasnt even possible for him to live i refused they said i would have him still born between 26 and 32 weeks because he was so severe was scheduled for a csection for valentines day 2007 went into labor february 10th my son was born alive borning trying his damnedest to make it he lived 8 hours but i held him for three of them im forever greatful for those few hours i spend with my son hearing his first cry holding him as tightly as i could i never wanted to let go and i will hold that mlment close to mynheart forever

  35. hi, i am carying the twins and one of which has this. We still hope he will live, but our doctors are forecasting us the worst. It it the hardest time in my life.

  36. ctober 26th 1986 my full term daughter born with Potter’s Syndrome I was 6mths. Pregnant when they realize I had lost all the amniotic fluid, I a
    Was in Seattle university ho spiral, and the first Pregnant woman to be put in the MRI to see if we could see inside my daughter’s body and see if she had any kidneys. It worked. Sadly no kidneys, bladder,uterine tubes.etc…

  37. My first pregnancy I was seven months pregnant. This was in 1994 they thought my water broke. I had no fluid left. Had two previous sonograms and his kidneys were "normal" come to find out there was no kidneys or bladder. I was in the hospital for a week, long story short I delivered the baby bay he looked fine but he would not survive with out the organs. He lived for ten minutes. Would not wish this experience on my worst enemy. Since the I have two heathy daughters 18

  38. Lost my first baby, my daughter, 3 years ago today on September 15, 2012 to Potter’s. She was 25 weeks gestation. Since then I have had another little girl with no problems. Not a day goes by that I don’t think about my oldest daughter.. I guess I’m still searching for answers as to why this happened.

  39. I am 21 weeks and 2 days pregnant and was told on 10/01/2015 that my first daughter has potters syndrome. It was devastating news. After reading about the experimental treatments and meeting with an amazing team of doctors in Austin Texas, My husband and I do not see it fair to bring her into this world with such complications. I will carry her full term and hope she is stillborn so she does not suffer. It is the hardest decision I have ever made in my life. This page has been the most help to me. Especially reading every mothers story. God Bless you all.

  40. Hello there my name is Sherri on dec 4 2015 I had a baby boy with the potter syndrome I was 5 and a half moths when we found out about Solomon having no kidneys I was told to go home and research a baby with out kidneys that’s how I found out .my beautiful baby boy would die there was no way out of it .i felt so alone .solomon lived a hour and a half God took him home now I’m going to get more awareness About it no mom or father should have to get on the net to find this out

  41. I lost my twin daughter to potters syndrome on August 26th, 2015. Shortly after she was born (at 36 weeks) we realized there was something wrong. We had known she had a dysplastic kidney but they always assumed the other was working great as fluid levels were always good for both babies. We realized very quickly that she did not have either kidney. She passed away in my arms hours later. Her identical sister had kept her alive by providing amniotic to her sac. She was born just under 5 pounds and was perfect. While the news and aftermath was devastating,I cherish the moments I had her and feel so lucky that she didn’t suffer long but has the chance to feel her mothers love, hear my voice, and feel my touch. There will not be a day I don’t think of her, miss her and wish I still had her in my arms. I’m so sorry we are all bonded by something so devastating but am happy to help anyone who needs support as they learn of potters and attempt to cope with the prognosis.

  42. I am currently 20 weeks pregnant with non identical twins. One twin has only one kidney which is non functioning, the baby has no fluid at all. We are carrying this baby until 32 weeks when we will allow it to pass away peacefully in my tummy only ever having known warmth and comfort. If it had not been twins I would have had a termination at 18 weeks but this carries a risk to the other baby. The baby’s twin sister is fine. Such a bitter sweet time but it is good to know we are not alone.

    No explanation as to why this has happened, I have one healthy daughter already. The babies were ivf conceived (icsi) so may have something to do with lack of natural selection boosted by hormone injections. Who knows… It’s just very, very sad. So sorry for anyone in this situation.

    • So sorry to hear of this I was curious as potters is most common in boys is the twin with only one kidney a boy or girl? I had a baby boy last May with potters he had no kidneys and we had him at 21 weeks he will forever be part of our family just like your precious baby will always be with you xxxx

  43. HI MY NAME IS JADA GIRLEY I GAVE BIRTH TO A SON NAME TIMOTHY GILBERT ON NOVEMBER 17,2014 I STILL HAVEN’T GOT THE ANSWERS TOO WHAT THIS WOULD BE BUTT I WAS FIVE MONTHS PREGNANT WHEN I FOUND OUT MY SON BARELY HAD FLUID AROUND HIM AT THIS TIME I WAS PREPARING FOR MY GENDER BUTT IT TOOK THE DOCTORS FOREVER TO EXAMINE MY CHILD MY DAUGHTER WAS TWO AND MY SON WAS THREE WHEN I FOUND OUT THIS INFORMATION ON MY BABY BOY TIMOTHY MY BELLY WAS BARELY BIG WITH HIM AND THEY TOLD ME THAT MY BABY HAD KIDNEY FAILURE WHICH WOULD CAUSE HIS LUNGS NOT TOO DEVELOPE AT THIS TIME ALL I HEARD WAS BAD NEWS I WALKED OUT CRYING WITH MY BABIES IN MY ARMS AT SEVEN MONTHS I DELIVERED HIM HE CAME OUT CRYING FOR A FEW EVERY ONE GOT TOO HOLD HIM WHEN HE CAME FROM HIS DADS ARMS BACK TO MINES HE PASSED AND I STILL HAVE MY MOMENTS WHEN I TELL THIS STORY TO PEOPLE BECAUSE I WENT FROM PUSHING TO PLANNING A FUNERAL FOR MY INFANT AND EXPLAINING THIS TO MY TODDLERS WHY THIER SIBLING WASN’T COMING HOME BUTY I JUST THOUGHT I SHOULD SHARE MY STORY IM NOT SURE IF THIS IS CONSIDERED THE SAME THING OR NOT I WOULD LOVE TO KNOW THANKS

    • I’m so sorry for what you went through. We just found out mins ago that our grandbaby has this.We are deeply sadden to say the least and never heard of this til today. My thoughts and prayers for you and your family. Hugs~

  44. Our first daughtet was born with Potters Syndrome This was the saddest time of my life. Christine was born November 17 1981. She weighed 5 lbs 6 Oz. She was beautiful! When she cried the first time she sounded like a little kitten. Such a soft cry. I was actually thinking how was I going to hear her at night.???? But very quickly everything was turned upside down. There was something wrong. They took her away to assess her. They decided that she needed to be transported to NICU at a hospital a few miles away. They brought her over for me to see her before she left. I touched her beautiful little face for the last time. Her breathing was very labored. So I wanted them to take care of her and find out what was wrong as soon as they could so she would get better. I had no idea that something deadly serious was wrong with her. A few hrs later we were told that she had potters syndrome. I had never heard of that but I learned very quickly what it was. Little Christine went to be a beautiful little angel only 8 hrs after she was born. Even after all of these years I am still heart broken and wonder why…my heart aches for parents who lose their child. ????

  45. I am so sorry to read through all of these heart-breaking stories. We have been there too. Our little boy Ciaran was diagnosed at 20 weeks with Potters. In Ireland, there is no termination allowed, unless you travel abroad, but me and hubby agreed that we would carry on anyway. Our eldest was 3 at the time and was so excited about a sibling coming. From the diagnosis time, we were honest with her that the baby could not stay. We grieved for our baby from 20 weeks which was devastating. I had placenta praevia also so I had to have a c-section. Our little one lived for 3 hours on his birthday, Christmas Eve of 2007. He came at 36 weeks at a beautiful time of the year. He is and always will be counted among our family. The loss is heart-wrenching but time will help you to keep going and live and remember our precious babies. We were just told that Potters is rare and a bad-luck situation. Thankfully we went on to have two more children with no health issues. Hope this helps some family know that they are not alone but to stay strong as the journey with Potters is one of the most horrible and sad journeys in life. Take care.

  46. In 1965, I moved to a new City in Canada with my husband and 2 year old daughter. I became pregnant right away and had a very good pregnancy. At 9 months pregnant, I went into a normal labour. The baby was breech and the doctor was having difficulty hearing the heart beat. I had a normal delivery and they managed to turn the baby. He was born with Potters Syndrome but they did not tell me at the time. I had to beg to see the baby and they took him away very abruptly. He died that day and I do not know how many hours he lived. We were in shock. The Doctor who delivered him did not come and see me. The funeral was conducted while I was still in the hospital. We knew no-one in that City. I was moved to another floor away from the maternity floor. It was years before a doctor told me at an annual checkup that there were other children born like mine. I finally discovered Potters Syndrome on the Internet. Our baby was born without any kidneys and had other defects. I never knew what they were. He is buried thousands of miles away. I often think of him, we called him Mark. I was terrified of getting pregnant again. We adopted a little boy and then years later had another biological child, a boy. I had placenta prevue and spent the last 2 months of my pregnancy on my back in the hospital. My first pregnancy was full term and my daughter was healthy. I had a very bad kidney infection during the first pregnancy with my daughter and spent time in the hospital. I am so thankful for the many people that have written in to this post. Today, I read about another couple that had a son born last week with Potters Syndrome. He died the same day. How many children have been born with this Syndrome. What research is going on. I am thankful for the ultrasounds that are available now so people can make a choice. That technology was not available to us. Is this genetic? I wish I knew more. Stay strong.

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