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Forum: Children with Special Needs


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April 24th, 2009, 05:43 AM
Ditzzy's Avatar Stupid Lamb;)
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..about your children's problems when you were pregnant with them?

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April 24th, 2009, 05:58 AM
stacyp's Avatar Mommy to Andrew & Luke
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I was almost out of the range for the quad screen (week wise) at the appointment it was offered. I had my u/s done that day & was told everything looked perfect. I even asked about the nuchal fold measurement (a common DS marker) & the u/s tech said it was WNL. So, my OB & I talked about it & she said the u/s was more accurate in picking up abnormalities than the screen. So, I elected not to have it done. Just odd that I asked about his nuchal fold.....but, now that I look back on it, I think it happened the best way for us because i would have worried too much. We did not know about his heart defects either.

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April 24th, 2009, 08:09 AM
quietsong's Avatar Just Another Slacker Mom
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Yes and no. I didn't catch the virus he was born with until around 30-32 weeks, so before that point there WAS nothing wrong with him or my pregnancy except for a low lying placenta.

At that point, after noticing his brain ventricles were a little large, I was referred to a perinatologist who completely misdiagnosed us. I spent the last month of my pregnancy believing Danny's corpus callosum - the bridge between the hemispheres of the brain - was absent and he would be severely mentally handicapped as a result. I hated that guy so much though; I mean, he even offered to give me a fetal MRI to try to confirm the diagnosis so I could consider terminating. At 33+ weeks. Yeah, I declined the MRI...

That month was hell. I tried to stay positive, but it was seriously difficult. I almost wish we hadn't had that late ultrasound. At the same time, if we hadn't I would have delivered at a different hospital and Danny would not have ended up with the incredible care he received for his NICU stay and the treatment that I honestly believe prevented him from developing some of the worst complications CMV has to offer.

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April 24th, 2009, 08:58 AM
Ditzzy's Avatar Stupid Lamb;)
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Kel, I totally forgot about that Dr and the enlarged ventricles. What kind of Dr would suggest terminating at 33 weeks?
You're right, though. It seems like it was a blessing in disguise for Danny.

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April 24th, 2009, 01:48 PM
kittycat's Avatar Platinum Supermommy
Join Date: Jul 2004
Location: Chicago, IL (W Burbs)
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No. For the most part, our loss, and my son's problems are a direct result of prematurity and the health issues that develop thereafter.

For Ian, we did know in utero that he had a huge head, and he was scanned many times - all times found to be normal. He was born with benign hydrocephalus (essentially - a big head that does carry a greater risk of brain injury due to falling, etc - but that didn't happen and it's resolved). He had bad jaundice (born at 37wks), but it got better then came back with questionable reflux. As a result of discovery - he ended up with surgery for Pyloric Stenosis. That's something that typically presents itself within the first month after birth. In his case, 4 weeks. It's urgent when it's discovered, that surgery is performed. He had his in less than 24 hours after confirmation. No resulting issues, healed just fine. He has a couple other quirks that seem hereditary (tongue-tie, feeding issues, etc) - but again, nothing in utero.
DH (44) ~~ Ian 2/22/07 37wks ~~ Kyle 12/30/03 23.6wks ~~ Konner (Twin Angel) 12/26/03, 23.3 wks
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April 25th, 2009, 09:50 AM
iamkc's Avatar Platinum Supermommy
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*I* did, but the nurse practitioners apparently didn't. I bled, he was tiny (easily felt from the outside), but no one bothered to do anything for me-never saw a doctor, either. I was in the high risk clinic, too. I'm still terribly bitter over the whole experience. They should have taken him early. We're just lucky that he's alive.

Every week at my appts (biweekly and weekly bc of high risk), I said something about all of it. They even did an ultrasound at 35 weeks, knew that he was small, but attributed it to him being squished in there sort of weirdly. At one point, I even asked them to take him. My very non-medical family could feel my belly and tell that he was super-skinny and small. Funny that nurse practitioners specially trained in the area at the clinic associated with the best overall clinic in the region could miss it, huh?

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April 25th, 2009, 01:07 PM
docsmomma's Avatar Platinum Supermommy
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While pg, no. When he was 2 months old I KNEW somethign was wrong but the doctors ignored me and blew off my concerns AND his symptoms. It wasn't until he was 6 months old we got a diagnosis, at a crucial time too. it wasn't until after treatment started that i found out that he will always need blood draws and CT scans and that his meds could cause liver damage and increases his risk for cancer.
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