baby born with no rectum

[ez]

My dear friends grandbaby was just born last night with this situation...I was curious if anyone has experienced this or has knowledge about it. I hesitate to look on medical sites...thanks.

 

[C.Ann]

Have I heard of it? Yes.. Do I know exactly how it's corrected? No.. But I do know that it can be corrected.. I would imagine the doctors will be discussing some type of surgery with the parents today..

Hope all goes well with the little one..

 

[npierce25]

I am postpartum nurse (since july) since I started I havent seed one, but we do assess all babies for it (that is one of the reasons the 1st temp is a rectal one). Is it just that the baby dosent have an opening? if so, than from what they told me, its an easy repair.

hope this helps, and best of luck to your friends family

 

[punkin]

I have a friend who had this birth defect. She had reconstructive surgery as a child and is 100% OK now. I don't know the details since I met her as an adult. This was 45 years ago, so I presume medical treatment has advanced and the baby should be fine.

 

[okeydokey]

Not this exact problem, but my friend's baby was born with no connection between her esophagus and her stomach so she had surgery to correct it. Everything was fine and she is a perfectly healthy 7 year old now. It's a wonder that they can fix these days.

 

[laurie31]

1 in 5000 babies are born with imperforate anus. Here is a site written for parents (and other laypeople) that might help answer your questions.

http://www.squidoo.com/imperforate-anus

 

[The Mystery Machine]

DH's cousin was born like this. I don't know much about it but he is fine and in his 40's, living a normal life.

I think he had a lot of surgeries as a baby to correct it. I can imagine with the technology of today that they certainly can do even better.

 

[zachnsamsmommy]

When my oldest son was in the NICU as a baby, the baby boy next to him was born with this problem. I think they did surgery to connect the anus to the rectum, but had to do a temporary ostomy during the healing process. Apparently, it is somewhat common, especially in boys. We left the NICU before this family, but the baby was doing quite well by the time we left 5 days later.

 

[rhonimouse]

I work at a pediatric hospital in Ohio and there are a team of surgeons that specialize in the treatment of this disorder. They are some of the best in the world. Families travel from all over to be treated here. Their specialty is Colorectal surgery. Drs. Marc Levitt and Alberto Pena are the surgeons. Dr. Pena is the inventor of one of the most well known and successful surgical procedures to correct this disorder. I am including a link to their site for more information (hoping that it is ok with DIS to post it) If the link is removed, just google the doctors names....

http://www.cincinnatichildrens.org/svc/alpha/c/colorectal/default.htm

also, there is a department within the hospital called Guest Services and they assit families traveling for care with reservations etc at discounted rates. If by chance your friend's family finds that they may have to visit:

http://www.cincinnatichildrens.org/svc/alpha/p/perinatal/families/visit/default.htm

Best of luck to your friend's family! Hopefully they can see past the shock of this diagnosis and celebrate the joy of the new addition to their family

You are a very good friend to share such support and concern!

Prayers and pixie dust,
Rhonda

 

[SereneOne]

My daughter was born this way and she had surgery to repair it.

In her case it was an imperforate anus with fistula. What we thought was her anus was a "cul-de-sac".

She has VACTERLS Association which is an acronym for multiple birth defects. My daughter has the V-missing and fused ribs, A-imperforate anus, C-cardiac, she had an ASD 11mm which was repaired by an Amplatzer device two weeks after her reconstructive surgery for her anus, T- is for trach issues, my DD did not have this, E- is esophagus issues, she did not have this, also ear deformities, R-is for Renal issues, my daughter has one functioning kidney, L is missing limbs and I think club feet, my DD did not have this, and S is for single umbilical cord, which gives them a heads up that something is wrong. If a baby has three of the above issues, they are considered to have VATERS Association.

The doctors mentioned are very good, but I know other doctors perform the surgery. Dr Abrams performed my daughter's surgery and he is very good, here in Greenville.

 

[MariDisney]

Just like the PP, my daughter was born with an imperforate anus with fistula. She had a rectum, but no anus. Thinngs inside were all routed the wrong way. It was a stressful beginning, for sure. But, she had surgery at 6 weeks to correct the issue. Now, at 11, she's absolutely fine except for some constipation sometimes. Thank God for modern medicine!

 

[C.Ann]

Any updates on the little one? I said a prayer last night that all would go well.. If you can, please keep us posted as time permits..

Thanks!

To all involved

 

[MiniGirl]

A friend had a son this past June born without a rectum. He has had surgery already but has one more coming up soon and then he will be done with surgeries.

He should have an full recovery and suffer absolutely no ill effects from this.

 

[ez]

the baby had surgery this morning and they put in a colostomy bag for now...I guess in six months they will do more surgery. The family is at a ronald mcdonald house which the grandmom says has been amazing, a real blessing. We only spoke for a minute so thats all I know right now.

 

[C.Ann]

the baby had surgery this morning and they put in a colostomy bag for now...I guess in six months they will do more surgery. The family is at a ronald mcdonald house which the grandmom says has been amazing, a real blessing. We only spoke for a minute so thats all I know right now.

Thanks for the update.. Will continue to pray for the little one..

I've heard those Ronald McDonald houses are really great.. I know of at least one near a big medical center here, but fortunately no one I know has had to use it since it was first built..

 

[NYUBwayBaby]

My uncle's family were at a Ronald McDonal House at one point because my cousin had a serious skin disorder (she's fine now). I've only heard good things.

Hopefully all will work out... from what others say it doesn't appear to be all the rare an occurance.

 

[SereneOne]

Just like the PP, my daughter was born with an imperforate anus with fistula. She had a rectum, but no anus. Thinngs inside were all routed the wrong way. It was a stressful beginning, for sure. But, she had surgery at 6 weeks to correct the issue. Now, at 11, she's absolutely fine except for some constipation sometimes. Thank God for modern medicine!

My daughter is on Miralax, which she gets in her g-tube at night. She still has to wear pull-ups because of leakage. Does your daughter have the same issues?

 

[SereneOne]

OP, have the doctor's noticed any other issues?

The colostomy bag most likely is temporary, if not though, thank God for the miracles they perform today, whether it be Amplatzer devices, feeding tubes or colostomy bags.

Praying for the little one and the family.

 

[C&G'sMama]

My DD was also born with an imperforate anus with a fistula. We were new parents and didn't think it looked right but it wasn't caught at birth. We took her to the pediatric surgeon at 2 weeks and he was livid and scared the heck out of us. Saying the baby should never have been released from the hospital should have gone right to them, etc. etc.

Anyway. At 2 weeks she had a colostomy, at 6 months she had surgery to have everything rerouted, had the fistula closed, and had pull-through surgery to create a functioning anus.

She is 10 today and she can't poop without laxatives. When she was four the Dr. wanted do to a permanent colostomy but we said no, that would be her decision to make and who knows what advances would be made in the mean time. She may have to get an irritation system someday but as long as she can manage through laxatives for now, that's how we go.

She is a thriving kid who Irish Dances, plays soccer and is our social butterfly.

To OP good luck to your friend's grandchild

 

[SereneOne]

My DD was also born with an imperforate anus with a fistula. We were new parents and didn't think it looked right but it wasn't caught at birth. We took her to the pediatric surgeon at 2 weeks and he was livid and scared the heck out of us. Saying the baby should never have been released from the hospital should have gone right to them, etc. etc.

Anyway. At 2 weeks she had a colostomy, at 6 months she had surgery to have everything rerouted, had the fistula closed, and had pull-through surgery to create a functioning anus.

She is 10 today and she can't poop without laxatives. When she was four the Dr. wanted do to a permanent colostomy but we said no, that would be her decision to make and who knows what advances would be made in the mean time. She may have to get an irritation system someday but as long as she can manage through laxatives for now, that's how we go.

She is a thriving kid who Irish Dances, plays soccer and is our social butterfly.

To OP good luck to your friend's grandchild

My daughter, they did not realize it until she was like FIVE YEARS OLD. We are lucky she did not die and they had to remove a pound of feces. She just turned seven in Oct and weighs 38 pounds and is 46 inches tall, so you can imagine how big she was then. I recall they were trying to get her up to thirty pounds for the heart surgery and I think she was still under. She was really constipated and was vomiting, etc. and we demanded answers, finally the peds surgeon looked at her and scheduled her for emergency surgery, two weeks before her heart surgery in Charleston.

Also with my daughter they found Hirschprung's disease when they went in to repair things. I don't know why they call it a disease when it is a birth defect. She is missing ganglion cells in her intestines which help with motility.

C&G'sMama, does your daughter still wear pullups? Meghan does, but when she needs to change, she goes to the nurse's office and takes care of herself. We have an appointment with her GI and I am hoping we can do more for her.