baby born with no rectum

[C&G'sMama]

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.

For starters, WOW I guess 2 weeks wasn't bad.

But the VATERS and Hirschpurng's are things the doctors suspected but she didn't have.

She doesn't wear pull ups. She's able to manage through diet and suppositories. All the other aspects of her "poop shoot" work properly. She does have minor leakage sometimes as she can't tell when she has to go. So as we said, she may need to get an irrigation system some day.

Hopefully the GI can do something more your DD. To be honest we haven't been to the in several years but will probably get her back in. The pediatric GI ticked me off when DD was 4 or 5 so we've just been working with our regular pediatrician since then.

 

[SereneOne]

For starters, WOW I guess 2 weeks wasn't bad.

But the VATERS and Hirschpurng's are things the doctors suspected but she didn't have.

She doesn't wear pull ups. She's able to manage through diet and suppositories. All the other aspects of her "poop shoot" work properly. She does have minor leakage sometimes as she can't tell when she has to go. So as we said, she may need to get an irrigation system some day.

Hopefully the GI can do something more your DD. To be honest we haven't been to the in several years but will probably get her back in. The pediatric GI ticked me off when DD was 4 or 5 so we've just been working with our regular pediatrician since then.

Meg has solid movements here or there, but she seems to get backed up and then it leaks around it (sorry TMI). Because she leaks we have her in pull ups. Meghan is tube fed though, three cans a day in her pump at night and then two or three throughout the day, gravity feed. She does eat some food, just not enough. She has this wonderful teacher this year, who is working with me and she has noticed Meghan packing her food in her mouth, gagging, etc. So I called her doctor and we have an appt with Kidnetics here. I am hoping that if we can get her eating by mouth that will help with her bowels...I think eating solid foods would make her bowels more solid and more mobile....I would think liquid only diet would contribute?

My daughter has come a long way, the two biggest issues for her right now are her bowels and her feeding tube.

Sorry OP! Did not mean to change the direction of the thread. Please let us know how the little one is doing.

 

[MariDisney]

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?

No, we were pretty lucky. She was on senokot from the time she was an infant. We started weaing it when she was about 9 and really upped the fiber in her diet. Now, she manages the fiber herself and will take senokot if needed, bit if she's really good about what she eats then it's not needed. We also don't have any leakage on any regular basis. There might be 1-2 incidents a year, but that's about it.

 

[SereneOne]

See, this is why I think once she is eating much more by mouth AND is old enough to know how to regulate the miralax/senacot, whatever, then she can probably get out of the pull-ups and have way less accidents. That would be so awesome. However, whether it leads to success or not, I am so very thankful for how far she has come and what a blessing she is.

I hope all is going well with the baby, OP.

 

[C.Ann]

Any new updates on the baby? Hope everything is still going well..

 

[zalansky]

OP - hope the new baby is doing well and will make a full recovery someday soon. Prayers and love to the family and to you for being a good friend.

To the moms who have children who were similarly affacted...you are all so strong! Its scary enough having a new born but then to have something happen that you were not prepared for - you all seem to have handled it well. Better than I might have! I am sending good vibes your children continue to thrive and one day are able to live without worrying about that condition again.

 

[Judy from Boise]

Meg has solid movements here or there, but she seems to get backed up and then it leaks around it (sorry TMI). Because she leaks we have her in pull ups. Meghan is tube fed though, three cans a day in her pump at night and then two or three throughout the day, gravity feed. She does eat some food, just not enough. She has this wonderful teacher this year, who is working with me and she has noticed Meghan packing her food in her mouth, gagging, etc. So I called her doctor and we have an appt with Kidnetics here. I am hoping that if we can get her eating by mouth that will help with her bowels...I think eating solid foods would make her bowels more solid and more mobile....I would think liquid only diet would contribute?

My daughter has come a long way, the two biggest issues for her right now are her bowels and her feeding tube.

Sorry OP! Did not mean to change the direction of the thread. Please let us know how the little one is doing.

If you aren't all ready working with a speech therapist, make sure to ask for a refferal....they do great work with kids that have aversions to eating.

 

[SereneOne]

If you aren't all ready working with a speech therapist, make sure to ask for a refferal....they do great work with kids that have aversions to eating.

Meg was seeing SP, PT and OT, but it stopped when she was three and the school took over

Her kindergarten teacher really sucked and was no help at all. This year she has and INCREDIBLE teacher who has had Meg sit next to her when at lunch and noticed the packing and gagging and asked for an OT that comes to the school to check her out (with my permission of course). She checked out Meg and said the only OT she could see was with strength issues and we are back to the playdough and scissor cutting. I have gotten a referral from my doc and I am calling in the morning to see if the center has an appointment for her to see an ST. I know a part of it is that she has had her g-tube replaced twice, maybe three times and it is VERY painful. All they do is put numbing cream around the site and then YANK out the bad tubing with a knitting needle device, and then shove the new one in....she screamed and I bit my mouth to keep from screaming. She is afraid to get her tube removed, bless her heart.

Okay, sorry to hog the thread.

These things have just been on my mind lately and it is great to talk to people who have experience with it all.

Hopefully the OP will update when they can.

 

[BernardandMissBianca]

Okay, sorry to hog the thread.

Don't apologize for hogging the thread. The families who have gone through this, including yourselves, I'm sure are helping the OP and family. Think about how many questions you had but didn't know anyone who had been through it too.

It sounds like just having surgery isn't a cure all. there are other steps the OP's family is going to have to take. I think you and the others have offered an invaluable service and support group for the OP.