Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Have YOU had genetic testing done?? Unless YOU are a carrier, the chances of you having another are very slim. was my second child....I've had three more children after him, all completely " normal " and healthy... I think it's completely normal to be nervous, and afraid... ~ANGEL~ Mom to 13, Mosaic Down Syndrome/Hirschsprung's Disease Lance 18, Tyler 14, 11 Jaeda 10 and Shayne 4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Congratulations!!! My oldest son, who is 12 has MDS and I am due in Feb with #6. We also have lost 3 to miscarriage and one to an ectopic pregnancy. We never worried about if the next child would have MDS, as we had faith that we would be given the child that God intended us to have. I know that we don't have another child with MDS/DS, but I have been down the road of people wondering why we would have another with our " risk " factors. After we got pregnant with #3, we didn't do all of the extra testing. Amniocentesis just gave me the heebee jeebees. I just didn't like the 1 in 250 chance of losing the baby. I wasn't going to abort, and I didn't feel like I needed to have " bad " news looming over me for the entire pregnancy. My husband's relative recently delivered a child, that the amnio told her was " normal " . However, this child probably has momma's Muscular Dystrophy, of which can't be detected on amnio. Mom and dad are in shock because all of the tests came back normal. Sometimes MDS isn't even seen in amnio. Also, I am not sure of the accuracy of the quad screen blood test, but it's predicessor was only correct in only 5% of the cases. Now, I don't go through my pregnancy totally blind. We do the high level sono, which sees just about everything that would need immediate care, ie-structural abnormalities. I haven't had too much trouble from my Dr's in requesting this testing only. Also, remember that MDS is a rare occurrence. Out of our 10 pregancies, Nat is the only one, that we know of, that has the MDS abnormality. I hope this helps, a bit. I will be praying for your comfort and lack of being nauseated!! LOL I just got out of the clutches of nausea 3 wks ago!! Take care! Irene in TX mom to Nat 12 MDS, Luke 10, Emilia 7, Lillian 5, Ikey the Dude 2.5 and #6 to arrive in Feb, hopefully not on dad's b-day!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Hi Nikki The chances of you having another child with MDS are very slim unless Collin has MTDS, then that would mean that you could be a carrier of the gene. I understand your fear. I think that most of us who have had children after our child with MDS have felt that small niggling of " what if? " I would not recommend an amnio, because of the risks it carries. I do know they have the blood test that you can take early on that may show signs of Down syndrome, but keep in mind that these tests, as well as an amnio, are not 100%. Try to just enjoy your pregnancy and not worry too much of what " could " happen. It is extremely unusual for a person to have more than one child with MDS or Ds. Kristy PS Congratulations on your pregnancy!!!!!!!! When are you due?? nicole wrote: Hi I have recently found out that I am pregnat. I am scared to death that I will have another child with mds. I am going to get all the testing done and if i do have anthoer child w/ mds i will still love it.. I just wanna know if anyone one else has has more than one child w/ ds or mds. Nikki ~ mother of collin 6 mds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Nikki, My daughter Naomi was my 2nd child, and she was born with Mosaic Translocation DS (MTDS) when I was 24 years old. Yale Genetic Dept test both myself and my husband, and we were not carriers. We went on to have a 3rd child... another daughter. I was a bit nervous throughout the pregnancy, but the only test I had done was a Level 2 ultrasound, to make sure this baby did not have any heart problems (our daughter with MTDS had AVSD, and ended up with 2 open heart surgeries). I must admit that the day that I was most nervous was the day I delivered our 3rd child... but there was nothing to be concerned about... she was born totally healthy, for which we were extremely grateful. From what I understand, unless the parents are carriers, it is extremely rare for 2 children to be born with DS in the same family. On another note, I must say that having another child shortly after my daughter with MTDS (they are exactly 2 years apart), was one of the best things for my daughter with MTDS. She learned so much from her younger sister... for a long time they were at similar skills levels, and they are best friends! They are now ages 7 and 9. Congratulations on your pregnancy! Nathalie in CT > > Hi I have recently found out that I am pregnat. I am scared to death > that I will have another child with mds. I am going to get all the > testing done and if i do have anthoer child w/ mds i will still love > it.. I just wanna know if anyone one else has has more than one child > w/ ds or mds. > > Nikki ~ mother of collin 6 mds > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Nikki - I COMPLETELY understand where you are coming from. My first daughter Emmerson was stillborn at 38 weeks - we never found out the exact reasons, but I was always petrified something would happen again. I had the triple screen when I was pregnant the first time and my mom asked me why - I just wanted to prepare myself. I can deal with the known, I can't deal with the unknown. My daughter Ella was born 2 years later - healthy as horse. Our son Caden who has MDS was born 2 1/2 years after Ella and at 20 days old was diagnosed with Leukemia which ultimately led to us finding out he had MDS. Which we were ECSTATIC to hear. I know it sounds crazy but his chances of survival went from 20% to 80-90%! We could handle DS - we could not handle loosing another child. The Leukemia actually turned out to be TMD - and went away on its own. understand wanting to know, but I had all tests. I had 3 level 2 ultrasounds that have been known to find characteristics of DS, I also had the triple screen - it came out normal and I had an amnio so I could be delivered early - they didn't want me to have to hit that 38 week mark if it wasn't necessary. All the tests came back normal and Caden does have MDS - 10% of his skin cells. So looking back at the experience, if I hadn't had a previous loss (that is the only reason I had the tests) I wouldn't have put myself through all those tests because they are not all that accurate. I hope this helps and of course I want to say Congratulations on your 2nd child growing inside of you! - Ella(5), Caden(3)-MDS IMDSA Fundraising Chairperson Quote Link to comment Share on other sites More sharing options...
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