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babies with birth defects...

post #1 of 12
Thread Starter 

is there a tribe, thread anything for anyone who's gone through this?

post #2 of 12

There are many, many children on here that have different birth defects.  Just make a post about specific issues and you are very likely to get someone going/that has gone through the same!

post #3 of 12

Yep, what cassie said!


My son has numerous "soft" defects, meaning things like his eyes being spaced further apart, upper lip being more smooth, lower jaw is small and recessed, ears are mis-shapen, etc.  In his case, it's part of a chromosomal syndrome with lots of accompanying medical issues.


A friend of mine locally had a baby two weeks ago born with an extra finger on his hand.  In his case it's just a random "dismorphysm" with no associated medical issues.  


There are many of us on here, with varying degrees of severity and impact to functioning.  What specifically are you looking for?  

post #4 of 12
Thread Starter 

My baby was born with "low imperforate anus"--from the doctor's explanation that means he *has* a hole, so it's less severe, as opposed to "high".


He has had his first surgery, which was to give him a colostomy, because his anus is smaller than 'typical' and he also has about an inch of colon that is more narrow than it should be--which does not sound like much, but it's enough that the doctor couldn't stretch and connect the 'normal' part to his bottom right away.  (I guess it's more typical with this condition to just have a very small bit near the bottom that is more narrow, that's 'fixable right away' as the doctor explained it.)


In about a year (when he is 20 lbs) he will have the surgery that will repair his bottom, I'm guessing remove the narrow area of colon and connect the 'normal' part of the colon to his bottom.  By that time, the 'narrow' area will be smaller in relation to his body size and the size of the rest of the colon.


about 3 months after that, when everything is healed, he will have surgery to reverse the colostomy.


He has no other associated conditions or problems that are sometimes associated with this---no abnormalities in his urinary system, no spinal malformations, nothing with any other organs, and does not appear to have any chromosome abnormalities or any other issues.  So just a random thing I guess.


but I was looking more for "in general" I guess....getting past wondering what I did for example.

post #5 of 12

My DS has a very minor birth defect -- he has Poland's syndrome & is missing a pectoral muscle & the nipple on that side is smaller than the other. It doesn't affect him in any way except visibly (i.e. he may be embarrassed to wear a swimsuit when he's older?) so I can't really compare it to what you & your DS are dealing with. That sounds rough & I wish him the best with those surgeries!


But I did go through a bit of the 'what did I do wrong' -- I was wracking my brain to figure out if I'd done anything, taken anything, etc. during pregnancy that led to this. Before it was formally diagnosed I wondered if all the interventions at birth somehow caused it. I also had this feeling that is hard to describe... like I didn't want to call it a 'birth defect'... I didn't want to admit that something wasn't *perfect* with him & felt I guess a bit defensive about it all. I'm glad it wasn't severe & the tests we ran didn't show any related medical issues so it wasn't too hard for me to move beyond the guilt etc. but still every time I look at his chest I wonder how he will feel about it, how to make sure he feels OK in his own skin, etc.

post #6 of 12

Congratulations on the birth of your son!


My son was born with esophageal atresia and two tracheoesophageal fistulas.  Basically his esophagus wasn't attached to his stomach, his trachea was instead. And he had two small tubes that connected his esophagus to his trachea that weren't supposed to be there. He had surgery to repair it at 24 hours old.


I too wondered if I had done something wrong or if it was my age (42).  The doctors all assured me that it was totally random.  1 out of 400,000 births have his exact birth defect.


He came home with a G/J tube, so we dealt with learning how to do all the home health care stuff.  He had 6 surgeries by the time he was 16 months, but thankfully none seem to be in our near future now.  He is 20 months.


Let me know if there is anything specific you would like to talk about.


post #7 of 12

Congratulations on your new son!  It's always a shock when our babies aren't born the way we expect them to be, and it takes a lot of time to get over that.  Basically there's no "wrong" way to grieve what your family is experiencing right now.  Some moms admit to having trouble bonding with their special needs babies, some moms bond in different ways than they did with their "typical" children (in my case, I turned into a fierce mama bear, protecting him with everything I had, but not really falling in love with him the same way I did my other sons)  All of that is normal, but you'll find few people who understand it.  


The same with the blaming game...drs can assure you all day long that you did nothing to cause your child's problems, but we're mothers, we harbor guilt anyway.  In my son's case, he has a missing piece of chromosome.  My husband and I were tested, he did not inherit it from either of us.  But still...I wonder.  His chromosome deletion happened at the moment of conception, therefore it couldn't have been caused by anything I did or didn't do during pregnancy.  But there are still days when I think that there must have been something I could have done differently.  It's just not fair.


I try to just focus on my son, and my other sons, otherwise my crazy brain gets out of hand with the "what-ifs".  I can't change anything now, so I focus on caring for him as best I can...therapies, medicines, school, specialists, etc.  It's a full time job.  

post #8 of 12

My son also has a pectoral "abnormality" that is minor. He has pectus excavatum which he got from me. :) It can be serious and require surgery later but both of us have mild cases. The sternum is concave.

He also has 2 toes that are webbed and a bump on one of them that they say is the beginning of another toe.

post #9 of 12

I have a daughter with some signifigant birth defects, however she DID get it from me (genetic) so I have struggled with the fact that my genes have caused her so much trouble.


But I woudlnt change her for the world. She is perfectly imperfect and the biggest blessing in our life. I have no regrets.

post #10 of 12
Thread Starter 

I love that...perfectly imperfect.


I'm totally in love with my babe...he's got the biggest bright eyes ever.  :)  And you'd never know all he's already been through or will go through to look at him, never know there was anything wrong unless you've been told.  In every other way, he's typical--eats, sleeps...even the colostomy is not really that big a deal, the difference is I'm cleaning an area on his tummy instead of his bottom.  but of course lots of times when I see it I'm reminded of what he's been through and will go through.


I really hate the word defect by the way....he's NOT defective.  I don't know what else to call it though.  But he's NOT defective.


And I guess if he had to have something different, this is one that he likely won't remember all the surgery and won't have lifelong issues.  Though I've been told not to expect him to toilet-learn pooping for YEARS past what is "typical".  A few boys with his condition do.  Many do not.  (I mean EVENTUALLY yes he will but most don't do it at the 'typical' age)


I wish though I was just a little bit more like DH.  He's just totally accepted this all as God's will, no questions, no guilt, no worries, it just is as it is, and we will all learn what we need to learn to raise him.

Once upon a time, I had faith like that...maybe someday I will again.

post #11 of 12

Where are you having the surgery?  Cincinnati Children's Hospital is the top center for colorectal conditions and the surgeons are wonderful.  I highly recommend them.  Also, check out the pull thru network for parent resources and others with imperforate anus. 


Congrats on your baby! 

post #12 of 12
Thread Starter 

Surgery one of 3 (two being the colostomy--putting it in and removal)  done locally.  I want to stay in this area now so he keeps the same doctor through the surgeries, which puts us here close to 2 years.  If that does not happen, well, I don't know.  My husband asked why 3 surgeries, did we HAVE to do this, was there another option.  I remember the surgeon talking about ONE doctor in the country....I *think* he said Cleveland, he could've said Cincinnati in all honesty I was too busy trying not to bawl over the fact that I was handing over my 3 day old baby for surgery...


Anyway what he said was this *one* doctor would have done a 2-step surgery.  He would have done my son's full "repair" surgery on his bottom and he would have stretched his colon at the size he is now, done all of that.  But this other doctor still would have put in and eventually taken out the colostomy.  So 2 surgeries total.  And, because of the length that the colon would have to be stretched in my son's case to connect the "normal" width area to his bottom....there are children who have had this done who are now experiencing complications that are avoided by waiting for the child to grow and not stretching the colon so far.


so DH and I felt the best course of action was the one we took, even though he will have 3 surgeries total.  We're waiting for him to grow.

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