Persistent Cloaca

Diana - posted on 08/19/2010 ( 87 moms have responded )

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I'm looking to connect with other moms who have daughters born with persistent cloaca. My daugther currently has a colostomy and vesicostomy. She is scheduled for surgery in two months for her main repair, and her ostomies will be taken down later.

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Jennifer - posted on 09/08/2011

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I am not the mom but the child who had a persistent cloaca. I'm 29 now and just learned that children born with a cloaca malformation are likely to have a neurogenic bladder. This causes constant pressure on the kidneys and will cause kidney damage over time. When I was born, doctors didn't know about this but now they do. I will have to self cath all the time or get a Mitrofanoff to try and preserve what remaining kidney function I have. Please have your child see a pediatric urologist who can perfrom a urodynamics and VCUG test. The urodynamics test will see if the bladder is causes pressure or not emptying completely. The VCUG will see if your child had reflux. I have both. Don't wait or your child can end up with kidney disease like me. :(

Feel free to email me at jenni179@gmail.com if you want to know what your child may be facing growing up with these medical problems. I would have loved to have someone with similar problems to me when I was younger.

Butik - posted on 11/23/2014

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I am the mum of abeautiful 17 year old who was born with persistant cloaca.at 1 day old she had a surgery where she had a super pubic catheter and a colostomy,i will never forget that day as long as I live looking ay my beautiful little baby with a tube coming from her tummy and a stoma.it all seemed so strange and overwhelming,,aoife had her corrective surgery at 6 months old a nine hour surgery..the longest and most stressfull 9 hours ever..the surgeon was prof martin corbally and words cannot describe how much we owe him,,aoife is about to turn 18 and apart from the odd accident she has more or less complete control.so never lose hope as we were told that there was a very high chance that aoife would be incontinent..primary school was tough as we were cayherising every 3 hours.aoife within weeks of being told to catherise was doing this herself!! she was not quite 5 years old! what an amazing child! she has always taken her challenges head on,i truly believe these girls are angels..our latest challenge is that scar tissue has more or less sealed her vaginal opening so she cannot use a tampon or have sex,,we are at the moment trying to get this fixed ,,but as always its not as straightforward as we thought,,but we will get there,it has been a rollercoaster from day one and I have shed many many tears and also felt extreme gratitude for the doctors and nurses who were amazing ..I just want to offer my support and encouragement to all you mums and your amazing daughters ,,our girls can have perfectly normal lives and grow to be inspiring young women..i also want to take the opportunity to reach out to anyone who has experienced scar tissue after the vaginal repair and what surgerys were needed and what to expect?

Tracey - posted on 12/17/2012

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Hi Helen

Where is your daughter having her surgery? I am so glad that my post has at least helped one person to see that long term these young girls can lead a full and normal life. It sounds exactly the same sort of time scale that we had with Hannah. The advice Hannah has just asked me to give you is to remember that your daughter will never remember what she is going through now - you will never forget it but as she gets older and then begins to understand she will be able to cope with whatever lies ahead. My only real piece of advice is to not wrap her in cotton wool, let her be a child, and you MUST tell her what is wrong with her from a very early age. I did both of those things with Hannah and at the age of 18 she went off to Australia for 7 months travelling and is currently at University. Don't hide her abnormalility make her proud of it.

Kathy - posted on 02/26/2015

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Hi.....thank you for posting all that information. My grand baby will be 3 this Sunday. She is my princess. I was wondering if you know how to look up a doctor to see how much experience with these type of problems that specific doctor has? We tried to go to Dr Pena in Cincinnati. Texas would not pay for the surgery or any of the care needed unless it was done in Texas. So we found 2 surgeons that supposedly had great experience in this .... they attempted Isabella's reconstruction surgery .... it was cut short when they cut her major artery and tore her one good kidney. God is the only reason she is still here with us! She did get her major reconstruction at Children's Dallas Hospital......but even them .... she has a different Dr for every part of her body! They all want to do painful things..... And a lot of times don't know what to do and don't agree on what to do. One ""doctor"" we found out was only a PA that had graduated 4 years earlier!! But a surgeon there had recommended her saying..... I'm referring you to her because she is experienced with cloaca! I want to look up the doctors she is being cared for by.... I know there is a way .... my friend had showed me the site.... but I don't remember what it was????? And.... how did you deal with your daughter's issues while she was in school as a child ? Things like bullying?? Helping her fit in??

Jay - posted on 07/28/2013

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We live in the Chicago area, and like Brandi, we travel to Cincinnati Children's for our daughter's care. We adopted her from China in 10/2009. She was born with the following: cloaca, a spinal defect of the sacrum, and a solitary kidney. Dr. Marc Levitt (colorectal) and Dr. Shumyle Alam (urology) have been absolutely integral in her life. She had her cloacal repair in spring 2010, colostomy takedown in fall 2010, bowel management program in spring 2011, Malone / Mitrofanoff / bladder augmentation in spring 2013. She has been preliminarily followed by Dr. Leslie Breech (gynecology), and will certainly be treated by her in the future.
I simply cannot begin to express in words the blessing that is Cincinnati Children's within our lives and the life of my daughter. I would travel around the world to be where they are.

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Whohyogi - posted on 05/16/2016

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have any oh your children been wrongly sexed at birth with cloacal issues . my daughter was sexed as a boy at birth .. xx

Claire - posted on 09/15/2015

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Type into search bar on Facebook
Persistent cloaca
It should come up with our group.
Then if u join watch out for a inbox message of one of admin or myself.
I've had an email of a lady who says can't find us.
I shall try to find u on fb but I can't reply via email for some strange reason.
Find me on fb if easier
I'm claire louise austin having middle name always makes easier find.
Profile picture is of me and my teenage daughter and yes I have purple pink hair and my daughter is not impressed lol as we were just outside our hospital as she was in poorly.

So for the Facebook group it's
Persistent cloaca
You should find it. We are a closed group but you should be able to find us.
Xxx

Claire - posted on 08/17/2015

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Oh if u ask to be accepted your message from us on Facebook will be in your others folder

Claire - posted on 08/17/2015

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Their is a persistent cloaca group on Facebook if anyone would like to join. Easy to find but closed so what posts in their stays in their.
Im admin.
If u want to know more I'm claire louise austin on Facebook and inbox me or email me at claire.a@hotmail.co.uk 😊...

Srabanti - posted on 08/02/2015

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Hi, This is my first post to this forum. My baby is born with a rare severe cloacal anomaly named 'cloacal extrophy' . Did any mom try and found the reason behind this ? I mean exactly what may have gone wrong inside us to result in this finally? I know you may think it is of no use to ponder over past now rather we need to focus on raising the child and plan for medical avenue ahead.
But if we can relate the cause to this result somehow, in future it will help other pregnant woman to avoid that.

Katielam616 - posted on 07/31/2015

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Hello everyone!

My name is Kate. I am 28 years old and I was born with a cloacal anomaly. I am always looking for people with the same condition because then people "get it". I was born with no urethra and a very small anus. I also had a prune belly. I've had spinal fusion, right nephrectomy, the full reconstruction, sigmoid resection and whatever else you can think of. Mine was spontaneous. No genetic link that were aware of. Today after 22 surgiee my bladder function is good. I cath once a day for patentcy and neurogenic bladder. I was just recently diagnosed with kidney disease. My bowel function is ok. I have chronic constipation but no colostomy anymore. Dr Hendren performed all of my surgeries. We were referred to him before anyone else tried to fix anything. I'm thankful for that because i know it could have been very different. There are so few of us and your children in the world it's so good to reach out to others who understand. Any questions you all have for me as an adult living with this condition let me know. my email is katielam616@gmail.com

Kate

Heather - posted on 03/16/2015

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I also just wanted to say I was bullied and I didn't fit in I still don't. And I am proud of it. If I have any regrets threw out my life it's that I cared what people thought about me and my situation, that I was embarrassed. I have been called a every name for my condition freak weirdo ect my advice to the moms teach you girls to say screw what ppl think of me. Teach them to use this as a test to see who is there real friend. I like my condition because it weeds out the fakes faster then I could with out it. Also don't treat them like there special because mentally they aren't and all that will do is make them dependent or spoiled. Yes love and care for them but also ground them when they act up. It's hard and I get it but your pity for them will be their down fall just figure I should say that I see it all the time...parents who don't know how to treat/ raise their kid when they have problems.

Heather - posted on 03/16/2015

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Hello everyone my name is Heather and I'm 25 I'm not a mom but I was born with cloaca malformations. I have a mitrofanoff and a mace. My doctors were Hendron in Boston and Henderson in florida I'm here if anyone of you need to talk or has any questions especially if you have it as well. Just email me at Loveisevol35@gmail.com

Kathy - posted on 02/26/2015

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Hi.... sorry I just saw this. Yes we have Dr Baker for one of my grand babies surgeons. Thank you though for responding. 😊

User - posted on 02/20/2015

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Michelle you can email me at heatherknight98@yahoo.com and who ever else just wants to talk about everything or share ideas and stories and give advice if really love it

Carla - posted on 02/09/2015

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Hello , my name is Carla , I am a mother of Mariah who is now 1 year and 9 months.

Mariah was also born with persistent cloca with imperforated anus , colostomy used for 1 year, today we are in desfralde step.

I am Brazilian , of Rio de Janeiro and would love to join the group on facebook.

carlavp@hotmail.com

Thank you !

S.mum - posted on 01/28/2015

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Hi
i wish i found this post 2,5 y.o when my lil one was born. it would be much easier :)
all the best
S.mum
www.cloaca.eu

Kathy - posted on 09/07/2014

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Yes! A lot of urinary infections with my grand baby. They put her urostomy back to try to separate urine from bowel....and because her bladder was not totally emptying and that stagnant fluid causing repetitive infections. They tell frequent UTIs are just part of life for people with cloaca....??

Diana - posted on 09/03/2014

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Welcome, Dana! We love hearing from older girls with cloaca! We parents love hearing your perspective. If you are on Facebook and checked out the "Persistent Cloaca" group yet, please feel free to do so. It is wonderful!

Dana - posted on 09/03/2014

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Well, I'm not a mom, but I'm a 20 years old girl that has cloaca and I have mitrofanoff and I do a day after day enema for 16 years now. All my surgeries were done by Prof. Alberto Pena in Cincinnati, Ohio. I also have scoliosis, and had a kidney failure when I was 13 yrs old and did a kidney transplant at the age of 16 in Heidelberg, Germany. I have succeeded to pull it all together finish my high school education, I am now a third year psychology student! I always have ups and downs from the whole cloaca problem, but I was able to get through them. Always thought I'm the only one who suffered from this medical case and haven't told anyone cause it is embarrassing and no one would understand. I'm glad to find this group! we can share stories and advises from one and another. If any of you need an advice or anything, just let me know. Here's my email dyounis93@gmail.com I'd be glad to help.

Dana - posted on 09/03/2014

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Hiiii !

OMG! I can't belive that I have found someone like me! my name is Dana Younis and I'm 20 yrs old from Jordan and I have cloaca tooo ! all my life I thought I'm the only one! I have mitroffonof too! and enema which sucks -.-' .. but Im glad that I have found people like me! I did my surgeries with Dr. Alberto Pena in cincinnati. you can contact me dyounis93@gmail.com

Vicki - posted on 05/09/2014

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My daughter was born with a rare persitant cloacal and has no other abnormalities her skin was all intact. And has no bum hole and one hole to wee from she is under great ormond street hospital in england. It also took 2 weeks to find the sex of her as she has two wombs 2 left kidneys 1 right kidney they did the xx n xy test which said more girl but there was more testostraone (sorry for bad spelling) in the end we took the more girl side.. the surgeon was so shocked but what he had seen as its so rare. I also have to healthy other kids. What are the chance of having another one with the same..xx

Rachel - posted on 03/23/2014

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Hey! So I'm not sure if anyone still uses this but I'm not a mom I was actually born with cloaca. My name is Rachel and I'm 17. Like I said was born with cloaca and have a stoma and a mitrofanoff for my bladder. I regularly attend Cincinnati Children's hospital. If you have any question you can email me rachelnicole38@gmail.com and I would be happy to answer them!

Michelle - posted on 03/17/2014

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My daughter is now 2 1/2 years old diagnosed with cloaca as well and has chronic kidney disease. About a year ago they did her reconstructive surgery and I thought it was really going to help with her urinary tract infections but she has had them over and over again I'm trying my hardest to prevent them but doesn't work. Are any other moms struggling with this? I don't know what to do at this point

Jackie - posted on 02/11/2014

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Thought i would put on the name of the Facebook group again for the others on this thread who have not joined yet and would like to. The group is 'persistent cloaca'. There are now 65 members which continues to grow. I would be interested to know if anyone has experience with 'posterior cloaca', this is what my grandaughter was born with and we are yet to come across anyone with the same type x I should also add my grandaughters cloaca is genetic x

Laurie - posted on 02/09/2014

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Hello to all families whose children have CLOACA......first and foremost parents need to understand each child born with CLOACA is different from others as the deformities ranges in severity/areas affected that no two are exactly alike so DON'T LOSE HOPE FOR YOUR CHILD'S FUTURE OR SUCCESS. A LOT DETERMINES ON WHO PERFORMS THE SURGERIES TOO. Dr. Hardy Hendren trained an entire hospital STAFF at Boston's Children's Hospital, Dr. ALBERTO PENA, our daughter's guardian angel surgeon, did her surgery at the New Hyde Park Jewish Hospital on Long Island but Dr. Pena' created an entire staff trained to help these children at the Cincinnati Children's Hospital 3333 Burnet Ave. Cincinnati, OH 45229 alberto.pena@cchmc.org 1-877-881-8479 or 1-513-636-3240 Before the internet, I wrote to families providing data and found a family whose child's physician didn't tell them of Dr. Pena nor Dr.Hendren having each surgery separately enduring 44. This mom chose to seek Dr. Hendren as we found her free airline tickets through American Airlines---ask, and hospitals have Ronald McDonald Houses for parents to stay at during the surgeries cheaply (was $10 a day). This mom was cathing every 1.5 hours 24hours a day while Dr. Hendren found why she was in renal failure was a fistula was sending stool from her colon directly to her kidney that the other doctor never found in 44 operations PLUS he discovered a 'normal' bladder NOT attached which he did creating a normal urinary system while the other doctor claimed she had no bladder----it wasn't in the normal location and shocked in 44 operations he never 'saw' it? This mom asked her doctor WHY he never told her of these 'experts'. His response was "I wanted to help and it was a professional challenge to me." Understand, the choice is the parent's and NOT the doctor. He had NO experience with Cloaca and 'was essentially' experimenting on her daughter that suffered as the damage resulted in needing a kidney transplant. Doing surgery on children is risky alone because there are no studies on how much medication to give and we almost LOST our daughter as a baby when a 'doctor in training' failed to calculate the medication for a baby and almost gave an adult dose but another person catch it before it was given that I learned parents must always double check with staff on the 'levels' given since our experience. Hospitals are a business and CLOACA patients require a LOT of surgeries that doctors want the business. It is to the benefit of the child to combine the surgeries because each surgical attempt cuts into muscles and you face risks as scar tissue will result from the operations and attach to organs affecting the results. The experts can lower the risks for your children which increases their chances for success. Unfortunately, due to the rarity, parents have to go to the experts and you will NOT find them at your local hospital. A family of a boy born without a penis was told they would have to raise him as a girl, which was true in the 1960's when they first had the ability to save these babies, but when I found this family, I informed them of Dr. Pena. Their doctor in Iowa had told them they didn't have to rush to do surgery and they could wait for 6 months. That is when GOD intervened sending them to me as I provided the data to them and they made the choice to go to Dr. Pena when he was still in NEW YORK. Dr. Pena surgery discovered if they waited their son would have died in 2 weeks from a blocked kidney the IOWA doctors didn't know. Dr. Pena and I provided information that surgery could allow their son to have a penis created so he could remain as a boy. They were so happy to have the information that enabled them to make the choice for their child. That is the key as each child's parent must be in control and ask questions especially since each case is different. My daughter is now 23 years old and has had 50 operations in 12 massive surgeries to keep her alive. She performs enamas daily and we were assured a doctor in WI could reconstruct her urethra, but he failed that she now can't cath. She has had enough and accepts that she uses her stomach muscles called VALSAVA technique to squeeze out the urine and uses POISE PADS to catch the dripping in between. Her tethered spinal cord had to be untethered twice due to scar tissue. We were told the neurosurgeon at the UW Children's Hospital was qualified as when I asked a question he 'laughed' at me only to learn from Dr. Menezes of Iowa Children's Hospital this surgeon had lost his license for a failed brain surgery and informed us he used the wrong cyst shunt, he allowed a student to close her incision which looks horrific like a railroad track and the lipoma that was suppose to be removed remained. This same hospital didn't diagnose our daughter until she was 13 months of age being told, "we can't do surgery until she is 25#" when now surgery is done right away as they essentially were not telling me "if she lives we can try and do surgery" but thank goodness a doctor had the ability to say, "this is beyond my ability and you need to see Dr. Pena." I will never forget a father at the Jewish Hospital SCREEMING at his 5 year old daughter for NOT successfully cathing herself. As parents of Cloaca children you will grow in strength and courage becoming advocates for your child/medical issues. Dr. Pena warned us "these children suffer from a high suicide risk as society doesn't accept 'odor' issues". As parents of a child with a disability you face a 95% divorce rate. The journey is hard but the rewards are beautiful witnessing your child's success as everyone who meets my daughter remarks about her amazing abilities/soul. I told her "I can't stop this from happening, but I will be there at your side holding your hand". What these children endure is nothing anyone will ever understand that YOU must PROTECT them and STAND UP for them because people will dismiss them because they can't SEE the disability. We had her medical needs provided under the Special Individualized Educational Program where the STATE and FEDERAL programs pay to provide for their medical needs at school. The problem we faced with our first school was they were taking those funds and using them for their own 'pet projects' due to budget cuts then denied the children their medical services. My daughter was suppose to have an aide at recess/gym to protect her from other children running into her due to her single kidney isn't protected by her ribs and her abdomen is 'medically fragile' from the surgeries that trauma could/can cause internal tearing resulting in her kidney shutting down or internal bleeding. They witnessed a child jump on her back while they secretly video taped her and concealed the knowledge of the trauma while she cried to me after I picked her up from back pain a MRI proved she suffered a broken back that required another 11 hour surgery. This school broke laws despite DPI and OCR ruled against them for abusing our child as they stripped her of her disabled status illegally. I was about to take them to court when my husband 'broke' from the stress of everything and left causing us to go through a divorce, foreclosure and bankruptcy. Despite it all, my life with my daughter has been pure sunshine as I wish she didn't have to endure the medical nightmare. I can't change that aspect , but I am doing my very best to give her the best chance in life to live and be happy. I took the time during the 8 months in the wheelchair to teach her 'crafts' that help her cope with frustrations when she physically can't do things as her peers can or when she is in so much pain she can't move these crafts keep her happy while her peers are always BORED. I always gave her 'music' or 'books' as means to 'escape' reality as a coping mechanism that she uses to calm herself when she faces difficulties/stress. DON'T LET the SCHOOL 'inform' the peers about your child without you present. We were not told their school nurse spoke to her entire 3 grade class and FREAKED them out that led to bullying and isolation through High School which we never understood and they told us, "Kelly is so wonderful as kids are kids....."leveling" to make them feel better about themselves they need to put down others. A fellow classmate revealed to us at her graduation party the school nurse had scared them to death by what she said. While I know of a family whose daughter didn't want anyone to know kept it secret but the result was she compromises herself by not doing the medical orders the doctors assign her. So, the choice to tell others or not to tell others is a personal one only the parents and their child choose in their situation. So much has changed since our daughter was born that I tell her, things might get better in your future that waiting for surgery if not risking your organs/life is OK. They creating body tissue in labs where before your choice was to use colon tissue or stomach tissue for reconstruction but we witnessed children's stoma's clog from the colon tissue as it creates mucus or 'eat away' the repair from the acidity from the stomach tissue. These children need BOTH parents as there are husbands who do remain in their children's lives .....the programs for financial help only help single parents in WI and limited budgets give more money to those who have cognitive issues, but I encourage you all to keep asking/keep looking despite WI not helping our daughter, your state might help yours. Charities turned us away too because 'CLOACA' doesn't fit their 'qualifications'. A rare condition won't have funding through normal avenues. What I did to survive was search for 'valuables' at garage sales or thrift stores and 'sold' them always making a profit to get buy or we increased our home value by home improvements doing the work ourselves then refinanced using equity to have money, and the final way I saved us money was 'not to spend money' which meant going without, buying everything we needed at a thrift store/garage sale---NEVER a STORE.....and I cooked everything from scratch keeping our food costs low. I was proud as this kept us from bankruptcy for 23 years. My husband only FORCED the issue in the divorce where I worked hard to find us a buyer for the house his actions lost that buyer as he has been playing games in this divorce. I can only be responsible for my contributions and am proud of my efforts in this journey but it was the "ANGELS" in my life that supported us and helped us when we needed help as they say these children are the 'closest ANGELS from GOD' here to teach lessons of GOD as he observes whether or not you help or walk away from these children in need. I have experienced true miracles in this process that were clear evidence GOD was present saying "I am here with you and you are NOT walking this journey ALONE." We don't have physical wealth or 'things' but we are RICH from the blessings our daughter has given to our lives. CLOACA is the most SEVERE BIRTH DEFECTS a child can be born with so PATIENCE MUST be given to your child dealing/coping with such SEVERE demands on them via the medical doctors where challenges to live life are a burden/hardship many ADULTS can't cope or deal with and these are YOUNG children who DON'T understand and physically can't comprehend this until their brain develops that ability but that is when they are 25 according to Dr. Phil. I encourage you to take lots of photos as you will forget as I recently looked back on our life/journey and due to the huge volume I am expected to 'retain' I forgot some things we endured. We recently faced 10 months of her illness as the GI Exploratory found "nothing" nor did the blood tests and her doctors couldn't find the cause why she was 'burping', having excessive acidity, and her enemas were not working as it turned out when we moved out of our home to a temp. living situation the WATER SOURCE we had available to us apparently had something that changed her BACTERIAL BALANCE in her GI system that caused her to be in the ER THREE times as it took 2 antibiotics to kill whatever caused her GI system to be dysfunctional raised an issue for CLOACA patients to BE CAREFUL with their WATER SOURCES.....and Dr. PENA stated it is a RISK for these children to be in 'outdoor' water sources ---rivers/lakes. Just FYI. I can be reached at "laurian63@yahoo.com" FELLOW MOMMIES...TAKE TIME for YOURSELF as I PUT my husband and daughter first......I wasted 32 years as he threw us away like trash and told the Judge we were a burden that resulted in us being homeless for 10 months. I now realized I should have put my daughter and myself first....as I was afraid if I didn't put him first he would abandon her. I treated him like a KING and my divorce therapist said made him a spoiled brat that he felt entitled and resentful instead of requiring of him to do his share as a responsible father should do his 50% instead of me doing 100%. My daughter revealed to me he never cared reflected in his actions that she is happier without his tantrums/rage as he felt sorry for himself drowned himself in alcohol. We are happier now when I thought we would be stronger together we were actually broken together and stronger apart. Still I can only be responsible for my actions and I am proud of myself and my daughter. He has to take on his shoulders what he did to his family/daughter as we were his angels in his life. I just am sharing because I would have made different choices if I had known all of the options/realities caring for a child with severe disabilities/medical needs. Keep a journal/log of details because you will be asked to repeat many details of their medical issues and it will become a long list. They now have a 'USB" Port Medical Alert bracelet allows you to have the history of your child's medical information available.....because Dr. Pena said a car accident can kill them, and you might be unconscious that a bracelet will give EMT's medical data on the USB ports as ambulances have computers to retrieve that data now. BE STRONG! LS

Hannalies - posted on 01/10/2014

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Cincinnati Children's Hospital. Dr. Alberto Pena. He is the best in the field of colorectal malformations.

Cheryl - posted on 01/02/2014

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My daughter was born with long channel cloaca (long channel being because her one hole is 4cm before it splits into 3. She also has the hole in her back and a possibly tethered cord. Her first surgery was the ostomy and 2 catheters. Im mostly curious how this happened. Im still waiting for the genetics test to see if its hereditary. I got drunk once when i was one month pregnant (before i knew). That is around the time that this developed, but its hard for me to believe that drinking beer one time caused all this. I was also living in mexico at the time, eating a lot of fruit (mexico doesnt have regulations on everything like the US does, and Im wondering if I was eating fruit that could have been growing somewhere toxic). Does anyone here know what caused their babys cloaca?

Francisca - posted on 09/19/2013

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My niece who will be 5yrs in October. She was born with a cloaca. I would like any advice on how to deal with the daily accidents and also advice or tips of how to deal when she starts primary school (kindergarten). She has no control over her bowel movements but does really well with her urine control. Also we live in the Portland area of Oregon and if any one know of an excellent doctor we can speak with about further evaluation it would be nice. She does see an urologist but the doctor she saw for the colon/rectum moved away to CA about 2yrs ago. My sister has spoken with some doctors but they don't just tell her that a colostomy surgery is the best but I think there has to be something else. Any advice, recommendation or tips would help.

Holles - posted on 07/06/2013

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Hello Kathy Fuchs have you ever heard of Dr. Linda Baker? She is currently located in Dallas Texas @ the Children Medical Center

Brandi - posted on 06/25/2013

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Hello everyone, I just wanted to post and say I have been where you all are. My daughter is now 12 years old and she was born with cloaca as well as a tethered cord. She had her reconstruction done with dr. Pena when he was in New York at 4months old. We live in Illinois and it was a far stretch but well worth it. He has now relocated to Cincinnati which is much closer but still about 7 hours away. Delaney is followed out there by a pediatric gynecologist, Dr. Pena for bowel management and just recently started to see Dr. Alam for urology. The hospital is wonderful.....and we have been to many in 12 years!! They all work as a team to care for all of the different special needs your daughter's have. Delaney's tethered cord was treated in Chicago and that is where she has been followed by Neuro and Urology until a few months ago. Delaney has had a Malone done (to do enemas nightly) and a mitroffinof to catheterize. She has no bowel or bladder control of her own. She was actually in a good case scenario with the cloaca, but her TC was so bad and her sacrum is half missing. My daughter looks and acts like a normal 12 year old. I would have never thought she would be living as normal of a life as she is when she was first born. If anyone has any questions please feel free to email me at bdixon326@sbcglobal.net. I will answer anything. Raising these girls is definitely a roller coaster ride but they can live fairly typical daily lives. Take each hurdle as it comes.....looking to far ahead can be very overwhelming.....take it from me. I cry tears of joy sometimes to see how normal my daughters preteen years have started. Sassy hormonal attitude and all!! I never could have imagined. Making sure your daughter's have competent doctors and advocate for them. Don't stop until you get them care you are comfortable with. Their best chances are making sure the surgeries are done correctly the first time! Unfortunately some of my daughter's were not. Please hang in there and if you have any questions feel free to contact me.

Kathy - posted on 05/30/2013

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Hello everyone....... first I am a grandma of a beautiful little girl with multiple malformations.......... I have been reading all these very helpful posts, and I was wondering a couple things....... does anyone know which one is better for the reconstructive surgery..... the hospital in Cinncinati or Boston, and what the differences are in these two hospitals? Also........... is there any funding anyone knows about to be able to travel to these places to have these surgeries done,and do the hospital have somewhere for the family to stay during the baby's care? We live in Texas and that would be a long way to either place, but we definately want Bella to have the very best Dr for this very serious and not well known surgery..........please email me at sharleyk1965@gmail.com if you have any information......... it would be greatly appreciated..........God bless all you wonderful mommies.........like my daughter ......... for hanging in there with these precious babies going through all this hell..............

User - posted on 05/30/2013

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Okay....so my daughter was born with no rectum or vaginal opening, right kidney bigger then its suppose to be and left smaller then its suppose to be with cyst and dialation in them left kidney only worked 26% right was 74% now since shes gone thru several surgeries and they cut her iliac vien in her right leg did damage to her only good kidney (right one) the left works 13% right 87% and her urologist says the left one is not worth saving. She was born also with hip dysplexia and her left leg and foot is smaller then the right in size and length, she has two halfs of a vagina and uterus . Not sure if she has a tether cord yet but most certainly needto get that checked. Her spine is curved a little so the doctors say and her pelvis bone is not developed the way it should be. When she was born two hours after she had surgery to repair her small intestines and had a iliostomy and vaginostomy after 6 weeks in the nicu shes came home and had another drain put in her abdomin the other side. It just really frusterates me that these doctors dont really know whats going on with her and they arent checking for everything they need to be. Theres so much more I can tell you guys but please if anyone reads this long story and has a daughter with the same problems, please email me cause I dont know how to work thid thing at all heatherknight98@yahoo.com. I am a 22 year old young mom and going to school through all this and it would be so nice to talk with someone thats going through the same and that maybe could help me out on finding doctors that have done this surgeries before and have seen this before. It would be real nice to have that stress off of me to kmow the doctors have dealt with this before and know what they are doing cause I feel like her doctors are just trying things and seeing if they work but dont know any other doctors that have seen this before andfixed it.

User - posted on 05/30/2013

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Hello I am the grandma of a baby with multiple cloacal malformations I am trying to find people or just someone that my daughter (the mommie) of our precious Bella can connect witth that is going through the same crazy rollercoaster ride with their babywith all the highs and lows of every day going through all this her email is .... heatherknight98@yahoo.com please...If you are looking for someone to ask questions, share things that work and dont work, just talk with someone that understands then please email her so you two can share....thank you and God Bless

User - posted on 05/30/2013

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Hello....first of all let me say,, welcome to the roller coaster ride...there are so many ups and downs with this situation. My precious grandbab6 was born with multiple cloacal malformations my daughter is also trying to find someone that can relate to what all you and her are going through. Please email her so you two can share ideas, experiences, things that work and dont work with your babies....questions and answers to each other.....just connecting with someone else that understands what you both are going through. Good luck and God Bless

User - posted on 05/30/2013

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Is there anyone out there that has a daughter that has cloacal malformations that can email my daughter she is looking for someone that is going through the same things she is with her precious baby girl Bella that she can share things with and have them share experiences, problems, things that work and dont work....just someone that is going through the same things ..... her email is heatherknight98@yahoo.com I sure hope someone is out there that can connect with her and her with them

Diana - posted on 05/18/2013

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Hi, Elmien! I would try contacting Cincinnati Children's Colorectal Center. You can visit their contact page here: http://www.cincinnatichildrens.org/servi...
I would encourage you to look through their entire website. It has lots of great information. The docs used to travel to perform operations in the past. I don't know if they still do, but it's worth a shot. Dr. Richard Rink from Riley Hospital in Indianapolis, IN, US also used to come to Europe once a year to operate. There also used to be a Dr. Passerini in Italy but I don't have any information on him besides his name. But these three are considered the experts in the field. Best of wishes to you!

Elmien - posted on 05/17/2013

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Hi, I'm 41 and was born in South Africa with an cloaca anus & not opening to my vigina, but after many operations I managed to get married and had a normal life for 10 years before I desided to get divorced because of religious reasons... However I never received a spinsfter and subsequently have been wearing female pads all my life as I'll never be able to control my stomach. I you do know of any latest technology how I can have this fixed after this many years...please let me know.
Sometimes when me stomach is upset...I have to wear adult nappies.
Kind regards
Elmien

Diana - posted on 05/16/2013

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Hi, everyone. So sorry I haven't been keeping up here. Hope everyone and their girls are doing well. For those who are newer, there is a Facebook group that is pretty active. If you scroll down through the messages on this board you'll come to a post about it. I know what it's like to be desperate for answers and waiting for a reply takes an eternity, and I feel like I've let some of you down by not replying to your posts and questions.

Katerina - posted on 04/09/2013

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Hi Amy, as you have read, my daughter has similar problem. When she was born, she had about 3,5kg. I brestfeeded her by breast milk till 10 months. Her weight gain was 400 g per month. When she was 6 month her weight was 5800 g, when she had first birthday her weight was 7500 g. Dont worry about her weight, if she is feeling lucky and fine. I started to give her child food from 6 months (with slowly steps).
Now she has 15 months and her weight is about 8 kg. She is small, but I think it will be better when she is older.
Your daughter drinks maternity milk or milk powder?
I wish you all the best and lot of energy for all operations..
katerina

Amy - posted on 04/08/2013

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Hi everyone, my daughter is 6 months old and also has a cloacal malformation as well as an imperforate anus. She is scheduled to have her tethered cord repaired next month and reconstruction surgery in June. I'm so grateful to read the posts of other parents who are experiencing similar things. I'm wondering if weight gain was an issue for other babies with this condition, and if so, how did you manage it? My daughters doctors are saying an ng tube for feeds is likely the next step for her to ensure she is at a healthy weight for surgery. Thanks in advance for any suggestions or information.

Andrea-Russo - posted on 03/21/2013

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Hello, our daughter will be 5yrs in May and starting primary school. She has very little feeling for fecal movements and has lots of 'little' accidents during the day, so she wears little pads. she can push with some force (her whole body goes tense) but she cannot 'pinch' with her muscles so she often has the feeling the feces is 'stuck'. With only diet, we help her to move her stools easily, but she has little to no control when she has to pass wind. Every day gets better & we learn more from her each day. We are hopeful she will have very good control & her urine control has always been quite good. She also has double uterus & vagina....this we know little about & will talk about it more with a specialist when she is older. Our hearts go out to your little girl & to your whole family.

Katerina - posted on 03/16/2013

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Hello, my name is Katerina and I am mother of my daughter Marie who was born on 5th January 2012 with cloacal malformation. We live in Czech republic. She had together of the urinary tract, vagina and rectum to form a single common channel that opens on the perineum. First day her life she was operated and was created colostomy. The process of changing bags was terrible in the beginning, but later on we mastered very well. After 10 months she was operated by anorectovaginourethoplasty (by method PSARP) to repair of urethra, vagina and rectum bringing each to a separate opening on the perineum. After this we started dilatation. End of January 2013 were parts of colon joined. Together with this diagnosis she was before one day operated with her heart.
Marie was born also with missing sacrum. My greatest concern are that she will be urin and fecal incontinence because of not evaluated muscles of pelvic part. And last thing is that she has also double uterus and vagina. I would to ask you... do you some experiences how to learn child to strenghten the muslces around bladder and rectum. Do you have some advisement how to prevent fecal and urine incontination.
Thank you in advance and I wish all of them the best for your children and patience for us.. Katerina

Helen - posted on 02/18/2013

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Hi everyone, My daughter is having her PSARVP surgery on the 28th of this month. Whilst I am glad that this will happen, I am also very nervous and worried about it. I guess as any mother would be. I am looking to get practical advice about what to expect after my little girl has her surgery. She will be 15 months old. I have been told that the bowel part of the surgery will have to be done through her abdomin, so I know this will have an impact on her recovery. I would be so grateful of any advice you could give. I like to be as prepared as possible, and want to know what it was like for you after your daughters had their major surgery. What was entailed in the recovery? What practical things did you have to do and know? Did they recover quickly etc?You can pm me on here, or reply on this thread.

Thanks

Maureen - posted on 01/31/2013

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Just found this site and I am the mother of a 19 year old girl with persisitent cloaca. Those first years were tough and we went through 2 years of colostomy, 14 years of straight cathing every four hours and 3 years ago a kidney transplant When she was a toddler I Ialways wondered how her growing up would play out. She has grown to be a compassionate, beautiful, mature and bright young lady.. My message to all of you moms out there, you can work through this, even when there are days when you wonder if you will ever get through it. Our daughter decided to keep her challenges private and not until she had the transplant did people begin to realize she had some challenges. She did it all growing up, sleepovers, she learned to cath at 7. Cheerleading, gymnastics, and ballet for 14 years. She even taught ballet as a highschooler. She is in college right now and will need some vaginal dilation but her origianl repair by Ablerto Pena was excellent. She did need enemas every 48 hrs up until 5th grade. Also at about 14 she seemed to develop better bladder strength/contol and the cathing stopped as she could void her bladder completely. It is not unusual for full bladder and fecal control to develop over time. I sometimes feel sad that she had so many challenges but then I realize she would have never become such an amzing young lady with out her life's journey and she has learned everyone's life is a journey.

Tracey - posted on 01/16/2013

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Hi Andrea

Hannah also has an older brother and they too have a special bond - nearly 23 years later the bond grows stronger I can assure you. With regard to the bowel incontience we also experienced that with Hannah. Thankfully school were fantastic and she had special help for 'toilet time'. She would go from constipated to unable to control, but we sent her to school with pads on. as she grew older, the muscles seemed to work better and by the age of 11 she seemed to have full control. Obviously during that time we still had accidents, even having to have enema's administered by nurses for when she became severly constipated, but I wonder whether, as they get older and everything grows they also become more aware. Even now she sometimes says "I need to go" and has to run but it is managable. I hope I have helped a bit :-)

Andrea - posted on 01/13/2013

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Hi again,

I forgot to mention, Georgia has tethered cord, too, and she had her spinal surgery at 2yrs old. She is developing well, and we have been out & away from hospital for about 2yrs. She is amazing & such an inspiration to us, she really doesn't remember much of anything to do with her surgeries etc. Her older brother remembers & he was very involved in helping with getting supplies & looking after his sister. They have a very special bond!

-Andrea

Andrea - posted on 01/13/2013

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Hi Everyone,

I am so thankful to find this community! Our little girl is now 4yrs old (starting school in May) and has had colostomy surgery at 7 days, the main reconstruction repair at about 12 mos. We then had to prepare her bottom with dilatations on a schedule, once happy with the size of the dilatation, she had her colostomy reversal. She has very little problem with constipation, but struggles when her stool is too loose since she has little control. She does get some sensation & can push to a certain point, but she cannot hold her stool if she has an upset tummy. We are trying to get her 'school ready' for May & we will have to apply for assistance at school as she will need someone to help her until she gets a bit older. She is not in pull ups, but we do rely on small pads or pantyliners to catch those little accidents. Does anyone have any other advice for the stage we are working on at the moment? We are worried she will get bullied at school, any advice will be appreciated. We are based in the far north of New Zealand ( I am American & my husband is from England).

Thank you so much for reaching out & if anyone would like further advice, please ask me.

Kind regards,
Andrea

Tracey - posted on 12/20/2012

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I would imagine they had - more because it is Great Ormond Street however Yorkhill is also a specialist Children's hospital. I think they have probably had to perform more since Hannah's reconstruction operation as that was nearly 22 years ago, and like everything things progress in ways, knowledge and expertise develop. Yesterday Hannah had all her catherter tubes removed at our local Dr's surgery and it was actually great that our nurse knew what a mitropanoff was (I am not sure whether or not your daughter will need one - Hannah didn't until she was 6). 16 years ago it seemed only specialists knew what it was.

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