Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 Debra - I think it's great what you have done - I share your feelings totally!!! Celeste Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 1999 Report Share Posted March 27, 1999 Debra- Thanks for sharing your view of adoption. You said it so well. There are probably many of us (I'm one atleast) who share your views but would find it hard to put into practice. You are a remarkable woman and all your children are fortunate to have you in their lives. Michele mom to Aubrie (16 mos) CHarGE and (7 yrs), wife to DJ, in IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 I know this is a bit late, but it only just occurred to me... When I was in the early stages of pregnancy I went for a scan at around 9 weeks. The doc spent ages and ages locating the embryo's heart beat, getting me really worried, but in the end found it and declared that the heart was so small and difficult to locate that I must have got my dates wrong and it must only be 6-7 weeks old. He gave me a due date of February 12. The next time I had a scan was at a different clinic, and at about 5 months. This time I got the due date January 29 -- correct according to my dates (which were not wrong, I must add!). At the time I just thought the first doc must have been wrong. But then Archie was born (on Jan 27), with VSD and pulmonary atresia (and one doc said he had a small heart too) -- now I'm wondering whether the first doc had in fact spotted that the heart was not developing correctly. Of course, he didn't put it down to that at that early stage, but had I stuck with that doctor, he may have noticed that things were developing a bit awry. Just a thought. The rest of my pregnancy was completely normal -- no excess fluid, nothing spotted on my other scans. I actually wrote to the hospital that did the 5 month scan asking why nothing was spotted -- they said that VSDs are very rare and difficult to spot prenatally. And no one was looking for choanal atresia or malformed ears. , Simon and Archie CHARgE Southampton PS Archie has taken to grinding his teeth -- urgh!!! -- and he's only got 3 of them! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 1999 Report Share Posted April 2, 1999 , Kennedy has taken to this terrible habit as of late as well!!! It absolutely floors me, I can't STAND it!!! Mom to Kennedy 14 mos old CHARGEr, 9, 7 and wife to Graeme New Brunswick Canada gweir@... http://www.geocities.com/SunsetStrip/Palms/5716/index.html >, Simon and Archie CHARgE Southampton >PS Archie has taken to grinding his teeth -- urgh!!! -- and he's only got 3 >of them! > > > >------------------------------------------------------------------------ >We are proud as punch of our new web site! >http://www.onelist.com >Onelist: The leading provider of free email community services >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 1999 Report Share Posted April 2, 1999 , I was also told the same thing by one of the midwives. She told me that heart defects could not be seen properly until 22wks!!!! I don't believe her but I don't suppose it makes any difference now. Anyway if I had known about his heart problems I would not have enjoyed my pregnancy and would have worried constantly. Jack is very,very special to us and I'm glad that we didn't have to make any choices about him before he was born. Not that I would have considered termination but to have been given the option is not something I want to think about! BTW, Jack also grinds his teeth. It sounds awful doesn't it!!!! Elaine mum to Elise(6yrs) & Jack(20 mths) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 1999 Report Share Posted April 2, 1999 In a message dated 99-04-01 16:19:49 EST, you write: << PS Archie has taken to grinding his teeth -- urgh!!! -- and he's only got 3 of them! >> Jillian only has 4 and she grinds them too. also had pulmonary atresia (no pulmonary artery at all, just a dangling string, was Archie's like that?) He also had a VSD.. None was detected at the ultrasound. Also, " normally " the docs don't hear a heartbeat until weeks 10-12, so the fact that he even looked at 9 weeks must have meant he suspected something. Were you high risk? Older? After having die with CHARGE, my docs treated me as high risk with Jillian and did every test possible to reassure me. To hear her heartbeat at 9 weeks, (just to ease my mind. It's NOT normal to search for it that early) he reached insid eme and pushed my uterus to the surface and we listened to her heartbeat. Even with the ultrasounds at 11 weks and 20 weeks, nothing was detected with her either. 's ears were not deformed on the outside at all. Inside was a wacky mess, but the outside were beautiful. Jillian's ears are deformed on the outside, but hearing is good. Go figure. Foley, Mom to 3 1/2, Died w/ CHARGE(would be 2 1/2) and Jillian 1 w/cHaRgE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 before they operated the docs thought Archie had no pulmonary artery at all (he was only living because the duct that usually closes after birth was kept open artificially with drugs). They tried to fix the problem with a shunt when Arch was 7 days old but that did not work -- the blood flow was not enough to keep his lungs supplied with oxygen and his sats started falling right off again. So when he was 8 days they did the " primary repair " -- and discovered that Arch actually did have something of a pulmonary artery -- just it was withered and blocked and had no valve. So I think he was very lucky - that whithered bit helped them complete the operation in just 4 hours and meant he needed fewer bits added, if you know what I mean. But still, you'd have thought something that major would be spotted by the 20-week scan... The doc who did the scan at 9 weeks wasn't suspicious of anything -- it was at a private clinic in Moscow (I used to live there) and I think because they charged around $120 a visit they thought they had to do something when you went to see the gyno, apart from just ask how you feel -- so a scan was it! I left Moscow fairly soon afterwards so I changed doctors etc. then. , Simon and Archie CHARgE Southampton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 1999 Report Share Posted April 5, 1999 Jeanne yes, I'm very glad in a way that I didn't know all about Archie's problems before he was born because I'm sure the worry about it would have had an effect on our health. And yes, those docs, they will tell you, on and on, that they know better than you your due date! , Simon and Archie CHARgE Southampton Quote Link to comment Share on other sites More sharing options...
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