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Tcarrol12
member
What caused your LO's condition?
Tcarrol12
member
LO has high IA and they have no idea what causes it. It's not a new condition but it is new to the medical world. Her surgeon at Cincinnati Children's in OH is the leading expert in the world in her condition his successor who also practices there is the only other person in the world who knows or cares near as much as him. It's hard enough to have a child with a malformation but having one that no one knows about had made it a very hard. lonely ride.
Through our support group (our life saver literally) we have heard talk of different doctors at universities doing studies on things similar to what DD has to rule out genetics but they really don't think it has anything to do with genetics. Others think it could be a long term effect of past generations being exposed to nerve agents over seas. Either way they can not tell us anything about why it happened. Im ok with the its a "fluke" thing answer but in the back of my head I really don't believe in flukes. they know it occured between 5-7 weeks gestation so why don't they know more about why? IDK just some things that still really bother me and seem to hold me back from accepting everything. I just wish someone could tell me it wasn't something I did. I know it's nothing I could have known about and prepared for but was there something we could have done to lower the chances, and bigger yet will the LO im carrying have it? They assure me he will not! There is only 1 or 2 cases ever recorded of two people in one family (not even siblings) having similar cases but I still can't help but wonder how they can assure me it wont happen when they don't even know why it happens.
Does anyone else have a LO with a condition that they can't explain?
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Re: What caused your LO's condition?
My son was deprived of oxygen in utero, and despite a ton of testing, they still don't know what happened to him in there. He also came out with a blood clot in his brachial artery in his arm and a bleed in his brain. No reasons for those problems either.
It was really hard for me to accept at first, and I kept asking what I could have done to prevent this, or make it better. I was assured there was nothing I could do, but like you, I found that hard to accept when they didn't know the reason to begin with.
I am coming to terms with everything, and I think that I am moving past the "what if" stage. I hope you new LO is problem free and you start to feel better about this.
What does high IA stand for? Just curious. I am sure it is not a computer idle issue, which is what I got when I googled....
All of Nate's issues are caused by one or all three microdeletions on chromosome #1. We know that one of them for sure caused one issue, the other two deletions we are still looking into.
At this point it doesn't really matter what caused it. It is interesting to me to try and figure out the "how" on an educational level. On a chromosomal level, there is nothing you can do to prevent it. It is what it is. I do know that if we ever get preganant again I will probably be a wreck with all of the "what ifs".
This is so true. Really, in very few cases can anything be prevented. You can drive yourself crazy wondering why. But it doesn't help you or your child. Instead, moving forward helps. There are people on here who don't even know what conditions their children have--to me that would be even more frustrating than knowing the answer to the "why."
I also don't believe in "flukes." I think that, except in the case of accidents (ie-O2 derprevation, trauma, etc), many conditions will ultiimately be genetically linked--but scientists and doctors haven't figured out how to look that closely yet. My geneticist is one of those people that marvels at how little we know about DNA and whatnot. He says that 2 years ago, they would not have seen my daughter's translocation. Imagine what they will see in 2 more years, let alone 10.
DD has an unbalanced chromosomal translocation. Did it cause her condition? Most likely, but who knows. She is the only one registered in the database with her genetic map, but lots of other kids have her condition.
my son is missing his hand and most of his left forearm due to amniotic band syndrome. like your LO, it occurred around 5 weeks gestation. Everything I've ever read about ABS is that it's also a fluke thing - albeit much more common than what you're describing. I'm lucky in that i've never blamed myself for it; I don't believe there has to be a reason for every little thing that happens.
I can't change his arm; even if i could have done something during those early weeks, it's too late for that. i try not to get caught up in giving power over to something I have no control of. Drs hand out assurances based on statistics - that's totally separate from the reason "why" a condition exists in the first place.
My son's cleft is unexplainable - could be environmental, could be genetics. They don't know what causes clefts. I of course blame myself since we think it is environmental (no family history & working on our 1st home right before I found out I was expecting).. it is hard, but it is what it is.
Blaming anything, blaming myself is not going to help him. All I know is that I could not imagine him not in our life. He amazes me everyday.
While my other two sons have no cleft issues (took extra environmental caution), we had a scare with our 2nd son with a simple dimple (fortunately nothing) & with our 3rd the cord was wrapped around his neck (stopped breathing at birth, but started breathing on his own).
Guess I blame it on our luck or genes, but I feel blessed to have my boys in my life.
Well, we don't know what our DS has. Right now he is just a bundle of symptoms. So I am always wondering what he has, what his future will look like, and what caused it. But what caused it has taken a seat in the way back, compared to what we all worry about-- what our LO's future will be like.
It's weird having a mystery like that in our life, but like most things, we have gotten more used to it.
Hang in there!
My son has a micro deletion on the chromosome 22. It is what caused his heart defect and comes with some other symptoms that he may or may not have. Only time will tell. It's hard to tell if his delays are from his rough 99 stay in the hospital at birth or from the deletion. It is probably a combo of both. There is absolutely nothing you can do to prevent a chromosome issue.
We are expecting our 2nd as well and of course we are scared and worried even though we know we don't have any higher risk of having a baby with this syndrome as any other person. It still scares us.
With Jon, not sure. I'm assuming him being born at 32 weeks has something to do with it. With Matthew, we know that there's something neurological going on and are hoping to figure out what it is soon. Again, being born at 32 weeks and at 3 pounds 9 ounces contributed somewhat. With Christopher, either my husband's sperm or my egg had a flaw in it which caused a microduplication on my son's 16th chromosome.
My son had a mild ischemic stroke in the middle cerebral artery somewhere within 24 hours of birth and also has a very rare genetic issue, that no one can tell us *literally* anything about, our pedi called the geneticist at Toronto Sick Kids, and he'd heard of one other case in Canada; we have no idea how this will impact him...Also, MTHFR (which is common-not really an issue), and a tiny PFO in his heart, (also common.)
We have no answers for anything. 100% normal pregnancy, minus a UTI, and I went overdue by 11 days...
I thank my lucky stars every day that the paediatrician on call knew his stuff, and medivaced us to a children's hospital with a NICU and Infant/Paediatric Stroke Specialist...
My son has Russell Silver Syndrome (RSS) which we just found out was caused by a methlyation problems on chromosome 11 (11p15 region). Many children w/ RSS dont get a positive genetic result and they go based off a clinical diagnosis since there are only 2 known genetic causes. Dr's think there are obviously many more that have yet to be discovered. I would have thought that knowing the specific reason "why" this happened would help but it hasnt really changed anything for me.
I know that I did everything in my power to get Nicholas here safe (including: IV therapy and a zofran pump for 12 weeks, 2 and a half months of strict hospital bedrest, etc.) I am thankful that we have dr's that can work with Nicholas to help him with any problems he may have and I am thankful for a diagnosis. As pp said I think not having a diagnosis at all would be the most frustrating thing in the world and my heart hurts for the families out there who are still searching for answers.