Welcome!

Victoria - posted on 01/30/2012

Hi All,I'm Vicky mum to Jasmine who was born on the 29th of dec 1995.

Jazz with both with ameila Vacteral/golden har syndrome.

Jazzy was born with a complete missing left arm

Severe scoliosis

Missing left Kidney

Some ribs missing ont he left side,

Under developed left lung

Skin tags

Imporforate anus (colostomy at 1 day old,still has it at age 16).

Jazz has had multiple surgeries,Nissans funderplacation for severe reflux.

Mulitple grommets

Rod inserted in her upper back at age 2 1/2

Bowel surgeries (unfortunatly she will never lose her colostomy),

Dental surgery.

Jazz is very small for her age 130cm tall and 31kg.

Jasmine was our first born child and then we went on to have 3 others .

I'm looking forward to getting to know you all and sharing experiences.xx

Tracy - posted on 08/22/2011

My daughter, Carley 14, was born 9 weeks preemie. She was born with VATER. She has had 24 surgeries to date.. ASD/VSD repair, TEfistula repair, Coanal Atresia repair, removal of a polysistic kidney, several bladder surgeries, Anal pull thru, vaginal reconstruction, tether spinal cord release, hystorectomy.. and the list goes on. She is doing great. We have her on an enema program to control her bowel but she still continues to bed wet at night. The doctors are saying that may never change. Carley's last surgery was in June, Vaginal reconstruction. She recovered well. We thought we would have to have another surgery in August. They thought her spine retethered but they put that on hold because they are still not convinced it really is. Carley has Scoliosis but they feel we don't need to do anything at this point to correct it. She does have one leg a lil longer than the other. I think right now the biggest frustration we both have is the night wetting.

Sarah - posted on 05/03/2011

my son was born on March 3rd with the same anus problem he had surgery the next day to fix it. He also has many other things that are associated with vater.

Brittany - posted on 10/07/2010

my son was born 3 months preemie and has an imperforate anus,one kidney and some hema vertebrae.

Heather - posted on 06/14/2009

Hey, ladies, thought I'd introduce myself. I'm Heather, Sage's Mama. My daughter Sage is 2and a half and has every "letter" except "A". Her esophogeal atresia is a constant problem, as everything needs to be minced or pureed, & even that doesn't guarantee it will go down! She was born with Stage 2 kidney reflux, now downgraded to Stage 1, yay! This very minute, she is recovering from her tethered cord release surgery, which, unfortunatley, did NOT go well at all, she had to stay in the hospital a bit longer & grew a massive infection at the surgical site, resulting in an emergency 2nd surgery. I will say, though, that she is standing MUCH straighter (we measured about a half-inch difference in height), and her scoliosis is not that noticeable anymore!

Cheryl - posted on 05/16/2009

Hi, I just joined this group when I got invited to join Circle of Moms. I live in a small town where even the home care nurse who helped me after one of my son's surgeries didn't understand about VATER syndrome.



My son was born in 1998 with imperforate anus, abnormally shaped sacral vertabrae, and abnormally shaped kidneys. Fortunately the vertabrae anomaly did not result in a tethered cord, which they worried about and did multiple scans for. his kidneys still function properly, but to this day he is still only partially continent.



The imperforate anus has resulted in 4 surgeries - a colostomy at 2 days, reconstruction of the anus at 6 months and reattaching the bowel at 10 months. When he was five, he still was not showing any signs of being able to toilet train and we started a whole new series of tests and treatments, including genetics testing him for Fragile X syndrome (which turned out negative). I was concerned about the amount of laxatives he had to take to prevent constipation (which is a very serious concern with children born with IA), we decided to try a fourth surgery and put in a cecostomy tube. It has been almost a year since that was done, and it has certainly helped with less soiling accidents, which was becoming a problem with teasing at school.



He was also born with Agenesis of the Corpus Callosum and other brain anomalies, which have resulted in development delays and characteristics of ADHD.



He is a wonderful child who has shown me how beautiful life can be, even with all the stress and frustrations.

Jenna - posted on 03/31/2009

They make it at the Sick Kids in Toronto

It helps the stomach contract to digest the food faster

and funfact: they have a pillform that is given to pumping mother to help produce more milk if their production is low (due to stress, etc. from having sick babies)

Jenna - posted on 03/31/2009

My daughter also has severe GERD for which she is on OMEprizole and Domperidone for

She is a couple months behind developmentally but I think a lot of that is due to her long hospital stay and major surgery recovery

Jenna - posted on 03/30/2009

my daughter is also gtube fed she is 4 1/2 months

Jenna - posted on 03/30/2009

My daughter was born in November 2008

She has two vertebrae fused

Cardiac problems (she just had open heart surgery to close a massive VSD and a smaller one and remove muscle tissue)

Imperforate Aus, which she has a colostomy bag for but the pull through hasn't been done yet... they were waiting on the heart surgery

She has grade 5 (severe) urinary reflux [something wrong with her uriters] we are going for an ultrasound next week

and apparently her thumbs are longer than normal...

She spent the first 6 weeks of her life at sick Kids in Toronto (and 1 1/2 months on and off afterwards)

But the genetics team said that she didn't have VACTRYL because she also has bilateral cleft lip and palate and agenesis of the corpus collosum (a part of the brain)

I joined this group anyways because I have never met or heard of another parent with a child with imperforate anus or children with multiple medical anomalies in general. It's encouraging to know other mothers have been or are going through a similar road as I am

Jenna - posted on 03/30/2009

My daughter was born in November 2008

She has two vertebrae fused

Cardiac problems (she just had open heart surgery to close a massive VSD and a smaller one and remove muscle tissue)

Imperforate Aus, which she has a colostomy bag for but the pull through hasn't been done yet... they were waiting on the heart surgery

She has grade 5 (severe) urinary reflux [something wrong with her uriters] we are going for an ultrasound next week

and apparently her thumbs are longer than normal...

She spent the first 6 weeks of her life at sick Kids in Toronto (and 1 1/2 months on and off afterwards)

But the genetics team said that she didn't have VACTRYL because she also has bilateral cleft lip and palate and agenesis of the corpus collosum (a part of the brain)

I joined this group anyways because I have never met or heard of another parent with a child with imperforate anus or children with multiple medical anomalies in general. It's encouraging to know other mothers have been or are going through a similar road as I am

Erin - posted on 03/26/2009

As far as Em's heart condition.. what Pulmunary Atresia/Tetrology of Fallot means is her Pulmonary artery (the one from the heart to the lungs) didn't form correctly - the part to the heart.  So they have to put a "conduit" of cadavar tissue from the heart to the part that goes to the lungs.  It will not grow with her so she'll have to have it replaced when she outgrows it.  Tetrology of Fallot - just means there are holes in the heart that causes the blood not to "mix" correctly in the heart.  She's had those fixed.

Cystic Kidneys - just means cysts developed in her kidneys in utero and cysts are basically dead tissue.  One kidney is totally non functioning - the other 1/3 had cysts in it, but the other 2/3 seems to be working and compensating for her.

Congential Scoliosis is different than most scoliosis that people know.  In her case she has 9 incomplete vertebrae.  2 she's missing 1/2 and 7 are triangular rather than rectangular.

She also has fused ribs and a 13th rib on one side.  I forget which one.  She's also hyper extensive in some joints and her left thumb is missing some tendons - but that's not life threatening :)

I'm currently pregnant with another daughter Sarah - unfortunately she has Trisomy 18. Basically this means at the time of conception she got 3 chromosome 18 instead of two.  This causes developmental delays as well as serious health issues.  Most do not survive in utero or long after birth.  We already know she has hypoplastic left heart syndrome - which means her left side of her heart is a lot smaller than the right.  Most normal kids that have this usually will have to have a heart transplant.  So we're not expecting much.

Sherrie - posted on 03/25/2009

Hi Carol,

It is great to hear from someone whos child is older.    Sorry for my lack of medical knowledge, but the reflux, is that prevent him from throwing up?  Lucas could not keep anything down for a long time, so they fixed it so he could not throw up.  I am always wondering if that will become a problem later in life.  I feel for him, knowing that when my stomach hurts, even though I hate the feeling / taste *lol*, I can throw up and always feel better afterwards, but he is unable.

And what is Esophageal Atresia ?

Funoplication, is that the G-tube, feeding through the stomach?  Lucas was tube fed until he was 2 years old.  When it was time to take the tube out, it was supposed to close on its own.  Unfortunately it didn't so they had to surgically close it.  he eats now like there is no tomorrow.  He can often pack away as much as my husband if not more at times!

Thanks for the post.  I would love to hear more about your sons early years and how he is doing now.

Sherrie - posted on 03/25/2009

Hi Erin,

Wow, I have to say I have never heard of the first or third item you have listed.  You will have to let me know what they mean.

I have though heard of scoliosis as they want to monitor Lucas closely for that during puberty as I guess it can possibly become a problem suring this time.

You have got it right though, they are really tough kids.  Even though Lucas had / has emotional / behavior problems, when it comes right down to it, how many of us could go this far? 

I have come to the understanding though, that Lucas has never known any different.  From day one he was in and out of the hospital.  The poor boys is deathly affraid of needles.  It was not until this year that we were able to get him to sit with us and have a needle without screaming his head off, and that is only because of bribery (gotta love a kid with a weakness)!  He is the biggest mighty machines fan in the world, so with the promise of going to Zellers after the needle for a toy if he does not scream, yell, or pull his arm away, we made it through bloodwork with only sobbing.  I told him he is allowed to not like it, be scared and even cry if he needs to.  He was SOOO proud of himself, he had to call his dad and other mom to say how brave he was!

He used to pee on me every time I took him for a needle.  It never failed, up until about a year ago, when he sat on my lap and after a few minutes of trying to talk him through the needle so they could do it with him ok, they would hold his arm down, i would hold his body still, and while they got the blood, my lap would get warm and wet :(   Never for his dad (for the very few times when he was home), just me :( 

Your daughter looks like a very happy girl, she has a great smile.  How old is your other child?

Thanks for the post, hope to hear from you soon.

Sherrie - posted on 03/25/2009

Hi Melissa,

I have not joined the group, but I will defiantely go check it out.  I am always looking for info.

Thanks for the tip!

Sherrie - posted on 03/25/2009

Hi Mandy,

I have heard the imperforte anus with the description of VATER, but am not quite sure what it is.  We have had lots of trouble with Lucas' bowel movements (soiling his pants) but have been told it is encopresis.  It has been going on for a couple years now and I find it hard to understand how this can continue for so long.  We are hoping it will be cleared up soon so we can start working on the night time wetting. 

How is your son doing with his kidney?  Lucas's valve (forgive my medical language *lol* I am SO not a doctor) that kept the bad stuff out of the kidney was a two way so he was monitored for years until it fixed itself.  Luckily he never had any infections, the meds he was on helped with that!

How is your son doing now?  He looks like a pretty active little guy in the photo you have posted!

Thanks for your post.

Talk with you soon!

Sherrie - posted on 03/25/2009

Hi Jennifer.

Lucas was 5 weeks early.  He was born with :

- an extra vertabrae

- te fistula

- one kidney

- asd and vsd

I know I am forgetting something......it will come to me.

When he had heart surgury at 5 months, he had a stroke that damaged the left side of his brain, making the right side of his body weak.

Oh, he was born with his left thumb joint / bone not connected, so the thumb was removed around 3 years old.  He is left handed though due to the weakness on his right side.

For the past couple of years we have been dealing with encopressis (sp?).  He is doing much better, the bowel accidents are alot less frequent and once that is done we can start working on the night time bed wetting.

He has cognitive delays which we thought were going pretty good, but have noticed a change so had a WISK done.  He got almost the exact same results as the one done two years ago, so we are continuing to work on that.

I will definately go check out the site you reccomend.  Any info is great.

Nice to meet you, sorry about the delay in getting back to you.  I get a little sidetracked at times and it takes me a while to get back :)

Talk with you again soon.

Erin - posted on 03/07/2009

I'm the mother of Emily (almost 3) who was born with:

1) Pulmunary Atresia/Tetrology of Fallot

2) Congential Scoliosis

3) Cystic Kidneys

She basically has one working partial kidney that's growing with her.  She's had 2 open heart surgeries and multple cath procedures for her heart.  And we're waiting until this fall before she'll have the surgery to have the VEPTR implanted for her back.

One thing I've noticed with these kids is that they are survivors :)

Mandy - posted on 01/17/2009

I am a mother with a 1 1/2 year old son born with imperforate anus. He was also born with just 1 kidney

Jennifer - posted on 01/16/2009

Hello. I just joined your group. I am a mother of a 6 yro girl, Kaetlynne, born with Imperforate Anus, TE Fistula, and tethered cord. Only recently, she has been diagnosed with cloaca. Was your step son a preemie? What conditions was he born with? Kaetlynne was born 5 weeks early and had small developmental delays due to this. Have you tried the pullthrunetwork.org. They have an abundance of information regarding VATER and VACTERAL.