Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Marci, It is what is is, or was what it was......don't cry over spilled milk now. You werent' selfish at all. My #1 son's cf didn't show up on ultra sound. We weren't looking for it, either. I didn't want to know the sex either, but there they were, the crooked feet at birth and there I was, freaked out and ignorant. But geeze woman think of the other two thousand things he could have had wrong with him....is it (was it) really reasonable to believe we could have found 99.9% of them via ultra sound? Hardly. It just was what it was - a bouncing baby boy with club feet and you have to look ahead, not back wards. You want to hear a Bad Mommy story, I didn't even reasearch it at birth! I waited till my poor kid was nearly 2 years old! I wasted a lot of time playing the blame game living in the deep abyss but now that same boy is 7 1/2 years old. He's not a baby with club feet anymore, he's a 7 year old boy and those days are far behind us. Just try to let go of it and move ahead. I don't know your story, your child's treatment story I mean and maybe he/she is really bad off but bad off or not, some day your baby will be a child and then a teen and then an adult and this is only one very small, passing phase, OK? With baby #2 we did look for it, and found it. It helped, but it didn't change the facts any. And with #3 coming, we'll look for it again through ultra sounds, only so we can plan but it won't change the outcome at birth. Enjoy your baby, don't let the condition consume you. s. did you know? I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Marci, It is what is is, or was what it was......don't cry over spilled milk now. You werent' selfish at all. My #1 son's cf didn't show up on ultra sound. We weren't looking for it, either. I didn't want to know the sex either, but there they were, the crooked feet at birth and there I was, freaked out and ignorant. But geeze woman think of the other two thousand things he could have had wrong with him....is it (was it) really reasonable to believe we could have found 99.9% of them via ultra sound? Hardly. It just was what it was - a bouncing baby boy with club feet and you have to look ahead, not back wards. You want to hear a Bad Mommy story, I didn't even reasearch it at birth! I waited till my poor kid was nearly 2 years old! I wasted a lot of time playing the blame game living in the deep abyss but now that same boy is 7 1/2 years old. He's not a baby with club feet anymore, he's a 7 year old boy and those days are far behind us. Just try to let go of it and move ahead. I don't know your story, your child's treatment story I mean and maybe he/she is really bad off but bad off or not, some day your baby will be a child and then a teen and then an adult and this is only one very small, passing phase, OK? With baby #2 we did look for it, and found it. It helped, but it didn't change the facts any. And with #3 coming, we'll look for it again through ultra sounds, only so we can plan but it won't change the outcome at birth. Enjoy your baby, don't let the condition consume you. s. did you know? I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Marci, Number one--QUIT BEATING YOURSELF UP!!!!! Okay, now that that's out of the way. We had a quick ultrasound just to find out what the sex of the baby was and they did not find 's clubfeet. I have often said if I just would have known I would have researched before he was born. But I was also on bedrest for preterm labor with him, maybe with that added stress I wouldn't have been able to hold him off (I did make it to 37 weeks). So you just never know. Your doing a great job taking care of her. She's lucky to have a dedicated mommy like you. Pam and Jaerd (8-12-01) > I've read that some of you found out about your babies clubfeet in an > ultrasound. At my 20 week ultrasound I did not want to know the sex, > so the tech did not look at the whole baby so we wouldn't accidently > see anything. She did measure a thigh bone but went right back above > the waist. Now I am beating myself up thinking that if I hadn't wanted > it to be a secret, there's a chance we might have known about her feet > before she was born. Then we would have done all the research and got > the right care sooner. Did most of you know before birth? I'm really > having a hard time with this and feel that because of a selfish > decision I put my baby behind in getting the right treatment. > > Marci > > Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Marci, Number one--QUIT BEATING YOURSELF UP!!!!! Okay, now that that's out of the way. We had a quick ultrasound just to find out what the sex of the baby was and they did not find 's clubfeet. I have often said if I just would have known I would have researched before he was born. But I was also on bedrest for preterm labor with him, maybe with that added stress I wouldn't have been able to hold him off (I did make it to 37 weeks). So you just never know. Your doing a great job taking care of her. She's lucky to have a dedicated mommy like you. Pam and Jaerd (8-12-01) > I've read that some of you found out about your babies clubfeet in an > ultrasound. At my 20 week ultrasound I did not want to know the sex, > so the tech did not look at the whole baby so we wouldn't accidently > see anything. She did measure a thigh bone but went right back above > the waist. Now I am beating myself up thinking that if I hadn't wanted > it to be a secret, there's a chance we might have known about her feet > before she was born. Then we would have done all the research and got > the right care sooner. Did most of you know before birth? I'm really > having a hard time with this and feel that because of a selfish > decision I put my baby behind in getting the right treatment. > > Marci > > Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Marci, We found out our daughter had clubfoot before she was born. BUT the Dr. that did the ultrasounds the 1st couple times (I had like 10 total cause I had a low lying placenta), did NOT catch it until later. Funny thing is, we looked back at some of her ultrasound pics, and in 1 you can actually see her clubfoot, but nobody caught it at that point. So dont beat yourself up over it. We didn tfind out until about the 7th or so untrasound. I believe I was about 30weeks when we found out. If God wanted you to know prior, He would have.... marci21175 wrote: I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2005 Report Share Posted August 19, 2005 Marci, We found out our daughter had clubfoot before she was born. BUT the Dr. that did the ultrasounds the 1st couple times (I had like 10 total cause I had a low lying placenta), did NOT catch it until later. Funny thing is, we looked back at some of her ultrasound pics, and in 1 you can actually see her clubfoot, but nobody caught it at that point. So dont beat yourself up over it. We didn tfind out until about the 7th or so untrasound. I believe I was about 30weeks when we found out. If God wanted you to know prior, He would have.... marci21175 wrote: I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 We had a scan at 12 weeks and the feet were not detected. We then had another scan a 20 weeks and we did want to know the sex but they checked for everything. They could not get a good view of the feet and she kept trying to move the baby around as she said his feet were down in 'a dip' whatever that is. We still had no clue there might be an issue and she said she would like us to go back for a second scan the following week when the baby would be in a better position. I asked if it had 2 feet and she said oh yes but she couldn't see the angle. We still had no clue. The following week we had the second scan where they hardly spoke and were quite obviously looking for something. She took several pictures and announced the the baby had talipes. Well we had never even heard of it. We went in to see the specialist who told us what it was all about and we went home. We had a horrible time then for several weeks looking a pictures and deciding our best treatment etc but finally came to terms with it and carried on. I guess what I am saying is even if you didn't know want to know the second they should have been checking for everything. I don't think you can just accidently see anything as it took her several minutes to see the sex of our baby and she was actually looking for it and then she said they could never be 100 per cent. I think it was their error when they scanned you. They most definately looked at every part of our baby regardless of if we had wanted to know the sex or not. Anyway my son is now 2 and his feet are wonderful and it was not as bad as I thought it was going to be and maybe if we didn't know beforehand we could have saved ourselves the weeks of worry and just dealt with it when he was born - who knows....... Rach, Steve and Connor -- did you know? I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 We had a scan at 12 weeks and the feet were not detected. We then had another scan a 20 weeks and we did want to know the sex but they checked for everything. They could not get a good view of the feet and she kept trying to move the baby around as she said his feet were down in 'a dip' whatever that is. We still had no clue there might be an issue and she said she would like us to go back for a second scan the following week when the baby would be in a better position. I asked if it had 2 feet and she said oh yes but she couldn't see the angle. We still had no clue. The following week we had the second scan where they hardly spoke and were quite obviously looking for something. She took several pictures and announced the the baby had talipes. Well we had never even heard of it. We went in to see the specialist who told us what it was all about and we went home. We had a horrible time then for several weeks looking a pictures and deciding our best treatment etc but finally came to terms with it and carried on. I guess what I am saying is even if you didn't know want to know the second they should have been checking for everything. I don't think you can just accidently see anything as it took her several minutes to see the sex of our baby and she was actually looking for it and then she said they could never be 100 per cent. I think it was their error when they scanned you. They most definately looked at every part of our baby regardless of if we had wanted to know the sex or not. Anyway my son is now 2 and his feet are wonderful and it was not as bad as I thought it was going to be and maybe if we didn't know beforehand we could have saved ourselves the weeks of worry and just dealt with it when he was born - who knows....... Rach, Steve and Connor -- did you know? I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 At 12:20 AM 8/20/2005, you wrote: >Anyway my son is now 2 and his feet are wonderful and it was not as bad as I >thought it was going to be and maybe if we didn't know beforehand we could >have saved ourselves the weeks of worry and just dealt with it when he was >born - who knows....... Rach, I think I'm on this side of the fence with this one... I don't know that I *would* have wanted to know beforehand. They didn't catch it on any of our scans either. And I had a few of them in the end that should have seen it but they weren't looking at feet then so I can understand it being missed. I was fortunate enough to get a doc who was on the right track in the first place, but even so we did end up switching docs for a more proper Ponseti Method casting (plus is was going to be free at Shriners - win win situation at the time) and I knew to come to the internet right away to get the skinny on it too. It only took me a few hours, if that, to come to the conclusion I was going to use this method and it was easy enough for me in this rather large city to find a skilled doc. If I didn't have these options however, knowing beforehand would have been much more important. So this does go both ways, at least IMO. I liked having a worry free pregnancy and it worked out for us anyway. But had it proven more difficult to get proper care right away... knowing and researching beforehand would have been invaluable. What's kind of interesting is that I had my laptop in the hospital for 4 days and I hardly touched it. I was so tired, and they'd told me it was positional and would resolve itself... time and again. I guess I really wanted to believe that. Of course till a more experienced doc looked at it on day 4 and pronounced it a true CF. Even then, with the hours I had waiting to be released I didn't look online much - still tired of course and just did cursory research and napped (which is not normal for me, I'm online way too much and normally would have been right on it but this was my third c-section and I knew I wasn't going to get much sleep at home so I slept there a lot!). It wasn't till I got home that I took much time to check it out. She was at her Ponseti Doc 1 day before her first cast was to come off and we haven't looked back since. So, super easy for us and I don't regret not knowing beforehand at all. I haven't even requested a full copy of the pictures from the u/s we did have to see if it showed then or not. I should do that. They did look everything over really well, perhaps it was too early? Kori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 At 12:20 AM 8/20/2005, you wrote: >Anyway my son is now 2 and his feet are wonderful and it was not as bad as I >thought it was going to be and maybe if we didn't know beforehand we could >have saved ourselves the weeks of worry and just dealt with it when he was >born - who knows....... Rach, I think I'm on this side of the fence with this one... I don't know that I *would* have wanted to know beforehand. They didn't catch it on any of our scans either. And I had a few of them in the end that should have seen it but they weren't looking at feet then so I can understand it being missed. I was fortunate enough to get a doc who was on the right track in the first place, but even so we did end up switching docs for a more proper Ponseti Method casting (plus is was going to be free at Shriners - win win situation at the time) and I knew to come to the internet right away to get the skinny on it too. It only took me a few hours, if that, to come to the conclusion I was going to use this method and it was easy enough for me in this rather large city to find a skilled doc. If I didn't have these options however, knowing beforehand would have been much more important. So this does go both ways, at least IMO. I liked having a worry free pregnancy and it worked out for us anyway. But had it proven more difficult to get proper care right away... knowing and researching beforehand would have been invaluable. What's kind of interesting is that I had my laptop in the hospital for 4 days and I hardly touched it. I was so tired, and they'd told me it was positional and would resolve itself... time and again. I guess I really wanted to believe that. Of course till a more experienced doc looked at it on day 4 and pronounced it a true CF. Even then, with the hours I had waiting to be released I didn't look online much - still tired of course and just did cursory research and napped (which is not normal for me, I'm online way too much and normally would have been right on it but this was my third c-section and I knew I wasn't going to get much sleep at home so I slept there a lot!). It wasn't till I got home that I took much time to check it out. She was at her Ponseti Doc 1 day before her first cast was to come off and we haven't looked back since. So, super easy for us and I don't regret not knowing beforehand at all. I haven't even requested a full copy of the pictures from the u/s we did have to see if it showed then or not. I should do that. They did look everything over really well, perhaps it was too early? Kori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 We didn't know either. Well, actually, we had an idea that something might be wrong with her leg/foot, but it might also be her cramped position at the time of the ultrasound. The radiologist couldn't confirm either way. We didn't concern ourselves with it because we knew there was nothing we could do until birth anyway. We never even saw or heard the term clubfoot (though after she was born I asked the dr. to read the sonogram report and the radiologist had put in there the possibility of club foot, we just knew there was a possible " twisted leg/foot " ). We were just VERY fortunate that our dr. gave us a referral to a pediatric orthopedist, before we even left the hospital, that happened to use the Ponseti method. We were just lucky I guess.... Marcia did you know? I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 We didn't know either. Well, actually, we had an idea that something might be wrong with her leg/foot, but it might also be her cramped position at the time of the ultrasound. The radiologist couldn't confirm either way. We didn't concern ourselves with it because we knew there was nothing we could do until birth anyway. We never even saw or heard the term clubfoot (though after she was born I asked the dr. to read the sonogram report and the radiologist had put in there the possibility of club foot, we just knew there was a possible " twisted leg/foot " ). We were just VERY fortunate that our dr. gave us a referral to a pediatric orthopedist, before we even left the hospital, that happened to use the Ponseti method. We were just lucky I guess.... Marcia did you know? I've read that some of you found out about your babies clubfeet in an ultrasound. At my 20 week ultrasound I did not want to know the sex, so the tech did not look at the whole baby so we wouldn't accidently see anything. She did measure a thigh bone but went right back above the waist. Now I am beating myself up thinking that if I hadn't wanted it to be a secret, there's a chance we might have known about her feet before she was born. Then we would have done all the research and got the right care sooner. Did most of you know before birth? I'm really having a hard time with this and feel that because of a selfish decision I put my baby behind in getting the right treatment. Marci Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 TO us, having the docs looks for cf in #2 was so we could plan to take time off work to travel to Iowa after he was born. By knowing, we could make the arrangements, kwim? And also, we were able to forewarn family members (grand mothers mostly) so they all had time to cope and adjust. By the time he was born we all knew what was coming, there was no shock, no surprise, the phase of initial disappointment had passed. We knew who would gather our mail and feed the dog while we went to see Dr. Ponseti....so in short, knowing ahead fo time has advantages. s. Re: did you know? I'm going to jump in on this too...I had my u/s with Ava at 18.5 weeks--we didn't want to know the sex, they measured the thigh, and that was it. No mention of her feet or anything. It was a complete shock to us when she was born. But quite honestly, should I ever get pg again, I don't think I would want them to look for CF. Nothing can be changed by knowing it's there, and it would have just led to further testing and worry and again--nothing would have been any different. We had the name of the ortho we were going to see literally the day she was born, and an appt. by the following day. I can understand why someone would choose to find out about CF if they have a history...but for me, I figure, why worry? I don't even find out the sex of my babies before birth...To me the u/s was a cursory exam looking for anything potentially more serious...Spina bifida, heart/lung/kidney/liver defects, etc. I realize that I'm not the norm--I don't do the AFP test/quad test, I've only had the glucose testing with my 1st pg. I personally feel alot of the tests they do are unnecessary, at best. But I understand that some people feel better having more testing done, and knowing. All that being said, hopefully I NEVER have to go through another pregnancy! > >Anyway my son is now 2 and his feet are wonderful and it was not as bad as I > >thought it was going to be and maybe if we didn't know beforehand we could > >have saved ourselves the weeks of worry and just dealt with it when he was > >born - who knows....... > > Rach, > > I think I'm on this side of the fence with this one... I don't know that I > *would* have wanted to know beforehand. They didn't catch it on any of our > scans either. And I had a few of them in the end that should have seen it > but they weren't looking at feet then so I can understand it being > missed. I was fortunate enough to get a doc who was on the right track in > the first place, but even so we did end up switching docs for a more proper > Ponseti Method casting (plus is was going to be free at Shriners - win win > situation at the time) and I knew to come to the internet right away to get > the skinny on it too. It only took me a few hours, if that, to come to the > conclusion I was going to use this method and it was easy enough for me in > this rather large city to find a skilled doc. If I didn't have these > options however, knowing beforehand would have been much more > important. So this does go both ways, at least IMO. I liked having a > worry free pregnancy and it worked out for us anyway. But had it proven > more difficult to get proper care right away... knowing and researching > beforehand would have been invaluable. > > What's kind of interesting is that I had my laptop in the hospital for 4 > days and I hardly touched it. I was so tired, and they'd told me it was > positional and would resolve itself... time and again. I guess I really > wanted to believe that. Of course till a more experienced doc looked at it > on day 4 and pronounced it a true CF. Even then, with the hours I had > waiting to be released I didn't look online much - still tired of course > and just did cursory research and napped (which is not normal for me, I'm > online way too much and normally would have been right on it but this was > my third c-section and I knew I wasn't going to get much sleep at home so I > slept there a lot!). It wasn't till I got home that I took much time to > check it out. She was at her Ponseti Doc 1 day before her first cast was > to come off and we haven't looked back since. So, super easy for us and I > don't regret not knowing beforehand at all. I haven't even requested a > full copy of the pictures from the u/s we did have to see if it showed then > or not. I should do that. They did look everything over really well, > perhaps it was too early? > > Kori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 TO us, having the docs looks for cf in #2 was so we could plan to take time off work to travel to Iowa after he was born. By knowing, we could make the arrangements, kwim? And also, we were able to forewarn family members (grand mothers mostly) so they all had time to cope and adjust. By the time he was born we all knew what was coming, there was no shock, no surprise, the phase of initial disappointment had passed. We knew who would gather our mail and feed the dog while we went to see Dr. Ponseti....so in short, knowing ahead fo time has advantages. s. Re: did you know? I'm going to jump in on this too...I had my u/s with Ava at 18.5 weeks--we didn't want to know the sex, they measured the thigh, and that was it. No mention of her feet or anything. It was a complete shock to us when she was born. But quite honestly, should I ever get pg again, I don't think I would want them to look for CF. Nothing can be changed by knowing it's there, and it would have just led to further testing and worry and again--nothing would have been any different. We had the name of the ortho we were going to see literally the day she was born, and an appt. by the following day. I can understand why someone would choose to find out about CF if they have a history...but for me, I figure, why worry? I don't even find out the sex of my babies before birth...To me the u/s was a cursory exam looking for anything potentially more serious...Spina bifida, heart/lung/kidney/liver defects, etc. I realize that I'm not the norm--I don't do the AFP test/quad test, I've only had the glucose testing with my 1st pg. I personally feel alot of the tests they do are unnecessary, at best. But I understand that some people feel better having more testing done, and knowing. All that being said, hopefully I NEVER have to go through another pregnancy! > >Anyway my son is now 2 and his feet are wonderful and it was not as bad as I > >thought it was going to be and maybe if we didn't know beforehand we could > >have saved ourselves the weeks of worry and just dealt with it when he was > >born - who knows....... > > Rach, > > I think I'm on this side of the fence with this one... I don't know that I > *would* have wanted to know beforehand. They didn't catch it on any of our > scans either. And I had a few of them in the end that should have seen it > but they weren't looking at feet then so I can understand it being > missed. I was fortunate enough to get a doc who was on the right track in > the first place, but even so we did end up switching docs for a more proper > Ponseti Method casting (plus is was going to be free at Shriners - win win > situation at the time) and I knew to come to the internet right away to get > the skinny on it too. It only took me a few hours, if that, to come to the > conclusion I was going to use this method and it was easy enough for me in > this rather large city to find a skilled doc. If I didn't have these > options however, knowing beforehand would have been much more > important. So this does go both ways, at least IMO. I liked having a > worry free pregnancy and it worked out for us anyway. But had it proven > more difficult to get proper care right away... knowing and researching > beforehand would have been invaluable. > > What's kind of interesting is that I had my laptop in the hospital for 4 > days and I hardly touched it. I was so tired, and they'd told me it was > positional and would resolve itself... time and again. I guess I really > wanted to believe that. Of course till a more experienced doc looked at it > on day 4 and pronounced it a true CF. Even then, with the hours I had > waiting to be released I didn't look online much - still tired of course > and just did cursory research and napped (which is not normal for me, I'm > online way too much and normally would have been right on it but this was > my third c-section and I knew I wasn't going to get much sleep at home so I > slept there a lot!). It wasn't till I got home that I took much time to > check it out. She was at her Ponseti Doc 1 day before her first cast was > to come off and we haven't looked back since. So, super easy for us and I > don't regret not knowing beforehand at all. I haven't even requested a > full copy of the pictures from the u/s we did have to see if it showed then > or not. I should do that. They did look everything over really well, > perhaps it was too early? > > Kori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Marci, Be a little easier on yourself. We had a level 2 u'sound at 20 wks. The tech even spent alot of time on the legs and feet b/c it looked as tho the feet were attached to each other and he had to get a shot that showed that they werent. Even with THAT much attention paid to his little feet, they didnt catch it. So I found out when Elijah was born and since my husband was deployed to Iraq, he found out when he saw the pictures from the birth that we emailed him. In hindsight, Im sure that it was the clubfoot that made the feet appear to be attached but no one looked at it any further after proving that the toes werent 'molded' together. I know what youre going thru w/ the Mommy guilt. I went thru it after Elijah was born for a couple reasons... one being that I didnt take my prenatal vitamins regularly. I took them with our other 3 pregnancies and there were no issues. In time it'll get easier to realize that theres nothing you or anyone else couldve done to change things. Please, cut yourself some slack or youll wear yourself down worrying about it. Best wishes, Lori and Elijah 3.26.04 atypical rcf dbb nights only Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Marci, Be a little easier on yourself. We had a level 2 u'sound at 20 wks. The tech even spent alot of time on the legs and feet b/c it looked as tho the feet were attached to each other and he had to get a shot that showed that they werent. Even with THAT much attention paid to his little feet, they didnt catch it. So I found out when Elijah was born and since my husband was deployed to Iraq, he found out when he saw the pictures from the birth that we emailed him. In hindsight, Im sure that it was the clubfoot that made the feet appear to be attached but no one looked at it any further after proving that the toes werent 'molded' together. I know what youre going thru w/ the Mommy guilt. I went thru it after Elijah was born for a couple reasons... one being that I didnt take my prenatal vitamins regularly. I took them with our other 3 pregnancies and there were no issues. In time it'll get easier to realize that theres nothing you or anyone else couldve done to change things. Please, cut yourself some slack or youll wear yourself down worrying about it. Best wishes, Lori and Elijah 3.26.04 atypical rcf dbb nights only Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Marci, My husband and I did want to know the gender of our baby, and even still they didn't detect the clubfoot at our ultrasound. Don't beat yourself up about this at all. Even if you had wanted to know the gender, it is entirely possible that they wouldn't have picked up on the clubfoot. They didn't for us. You were not selfish for not wanting to know the gender of your baby! That is one of the greatest surprises you can have in life, and many people choose not to know! I always admire people who have the patience to wait it out. I'm far to impatient to wait. Regardless, the ultrasound technician can look for those things without revealing gender to you. If/when you have another child, you can still be surprised AND ask them to fully check out the lower part of the body including the feet. Best wishes, > I've read that some of you found out about your babies clubfeet in an > ultrasound. At my 20 week ultrasound I did not want to know the sex, > so the tech did not look at the whole baby so we wouldn't accidently > see anything. She did measure a thigh bone but went right back above > the waist. Now I am beating myself up thinking that if I hadn't wanted > it to be a secret, there's a chance we might have known about her feet > before she was born. Then we would have done all the research and got > the right care sooner. Did most of you know before birth? I'm really > having a hard time with this and feel that because of a selfish > decision I put my baby behind in getting the right treatment. > > Marci > > Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Marci, My husband and I did want to know the gender of our baby, and even still they didn't detect the clubfoot at our ultrasound. Don't beat yourself up about this at all. Even if you had wanted to know the gender, it is entirely possible that they wouldn't have picked up on the clubfoot. They didn't for us. You were not selfish for not wanting to know the gender of your baby! That is one of the greatest surprises you can have in life, and many people choose not to know! I always admire people who have the patience to wait it out. I'm far to impatient to wait. Regardless, the ultrasound technician can look for those things without revealing gender to you. If/when you have another child, you can still be surprised AND ask them to fully check out the lower part of the body including the feet. Best wishes, > I've read that some of you found out about your babies clubfeet in an > ultrasound. At my 20 week ultrasound I did not want to know the sex, > so the tech did not look at the whole baby so we wouldn't accidently > see anything. She did measure a thigh bone but went right back above > the waist. Now I am beating myself up thinking that if I hadn't wanted > it to be a secret, there's a chance we might have known about her feet > before she was born. Then we would have done all the research and got > the right care sooner. Did most of you know before birth? I'm really > having a hard time with this and feel that because of a selfish > decision I put my baby behind in getting the right treatment. > > Marci > > Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 I had to add that due to gestational diabetes, I had weekly u'sounds for about 7-8 weeks or more and they didnt see it even in those scans. I also had Drs tell me that it was 'positional' afterwards. No less than SIX different pediatricians told me the exact same thing but all said that they would refer me to Orthopedics 'anyway'. They told me in the meantime to just gently work the foot outward and it would be fine. When we finally got to our orthopedic surgeon, she took one look and said, " Yup, its clubfoot. " I was still in denial and told her that SIX doctors in L & D told me it was positional. I guess I thought if enough people said it, it must be true and if I could only convince her it would be okay. For the most part, Ive been really happy w/ his care by Dr Kelleher, who is no longer at Keesler AFB in Biloxi. The one thing she didnt do was to set his bar to 5 deg dorsiflexion after his last tenotomy so that entire second tenotomy was a wasted effort. We lost every bit of ground she hoped to achieve with that. She wasnt Ponseti certified but she practiced the castings and etc to a T. I dont think she meant to drop the ball, surely not... She was overloaded and facing a 6 month deployment herself. Not that its a viable excuse for not setting the bar the way it shouldve been but I think thats the reason for it. Anyway, all you can do is read everything you can get your hands on. This board is an awesome place to gather info that you just cant get anywhere else. Most importantly, trust your gut. Even if they tell you something that doesnt sound right, question them and even then... if you dont like the way it sounds, take pictures and send them directly to Ponseti for his opinion. And remember, by no means are you alone in this. We might not be next door but with the board or yahoo messenger, you can get in touch w/ one of us most anytime of the day. Lori and Elijah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 I had to add that due to gestational diabetes, I had weekly u'sounds for about 7-8 weeks or more and they didnt see it even in those scans. I also had Drs tell me that it was 'positional' afterwards. No less than SIX different pediatricians told me the exact same thing but all said that they would refer me to Orthopedics 'anyway'. They told me in the meantime to just gently work the foot outward and it would be fine. When we finally got to our orthopedic surgeon, she took one look and said, " Yup, its clubfoot. " I was still in denial and told her that SIX doctors in L & D told me it was positional. I guess I thought if enough people said it, it must be true and if I could only convince her it would be okay. For the most part, Ive been really happy w/ his care by Dr Kelleher, who is no longer at Keesler AFB in Biloxi. The one thing she didnt do was to set his bar to 5 deg dorsiflexion after his last tenotomy so that entire second tenotomy was a wasted effort. We lost every bit of ground she hoped to achieve with that. She wasnt Ponseti certified but she practiced the castings and etc to a T. I dont think she meant to drop the ball, surely not... She was overloaded and facing a 6 month deployment herself. Not that its a viable excuse for not setting the bar the way it shouldve been but I think thats the reason for it. Anyway, all you can do is read everything you can get your hands on. This board is an awesome place to gather info that you just cant get anywhere else. Most importantly, trust your gut. Even if they tell you something that doesnt sound right, question them and even then... if you dont like the way it sounds, take pictures and send them directly to Ponseti for his opinion. And remember, by no means are you alone in this. We might not be next door but with the board or yahoo messenger, you can get in touch w/ one of us most anytime of the day. Lori and Elijah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Hi Marci, Please don't beat yourself up about this! I did not know prior to 's birth about any of her birth defects and I had an ultrasound once a month almost. They did not see her heart conditions or her foot and we have a beautiful ultrsound picture of a foot! I am assuming it is her right (non-CF) foot since it's straight as can be. I also did not find out her gender while I was pregnant and our tech did look at the whole baby. We started out with a local doctor for her clubfoot who did do some good but just didn't follow the Ponseti method correctly. We didn't get to a good (great!!) Ponseti doctor until she was 10 months old. Now her foot is beautiful! Yes, I understand completely about feeling gulity about not getting your child the BEST treatment right away but Molly is getting the right treatment now and that's what counts!! Marilouise 9/9/03, LCF, DBB 12/7 Owen and 3/20/99 > I've read that some of you found out about your babies clubfeet in an > ultrasound. At my 20 week ultrasound I did not want to know the sex, > so the tech did not look at the whole baby so we wouldn't accidently > see anything. She did measure a thigh bone but went right back above > the waist. Now I am beating myself up thinking that if I hadn't wanted > it to be a secret, there's a chance we might have known about her feet > before she was born. Then we would have done all the research and got > the right care sooner. Did most of you know before birth? I'm really > having a hard time with this and feel that because of a selfish > decision I put my baby behind in getting the right treatment. > > Marci > > Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Hi Marci, Please don't beat yourself up about this! I did not know prior to 's birth about any of her birth defects and I had an ultrasound once a month almost. They did not see her heart conditions or her foot and we have a beautiful ultrsound picture of a foot! I am assuming it is her right (non-CF) foot since it's straight as can be. I also did not find out her gender while I was pregnant and our tech did look at the whole baby. We started out with a local doctor for her clubfoot who did do some good but just didn't follow the Ponseti method correctly. We didn't get to a good (great!!) Ponseti doctor until she was 10 months old. Now her foot is beautiful! Yes, I understand completely about feeling gulity about not getting your child the BEST treatment right away but Molly is getting the right treatment now and that's what counts!! Marilouise 9/9/03, LCF, DBB 12/7 Owen and 3/20/99 > I've read that some of you found out about your babies clubfeet in an > ultrasound. At my 20 week ultrasound I did not want to know the sex, > so the tech did not look at the whole baby so we wouldn't accidently > see anything. She did measure a thigh bone but went right back above > the waist. Now I am beating myself up thinking that if I hadn't wanted > it to be a secret, there's a chance we might have known about her feet > before she was born. Then we would have done all the research and got > the right care sooner. Did most of you know before birth? I'm really > having a hard time with this and feel that because of a selfish > decision I put my baby behind in getting the right treatment. > > Marci > > Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Hi Marci, Please don't be so hard on yourself. I know it is hard, I felt so guilty because I did want to know what I was going to have and the doctors never found the CF. I had 3 or 4 ultrasounds and we never saw it nor did the doctors. I could not wait to know and it still was'nt found so maybe they still would not have seen it. I also did the " what if.., and maybe if.. " thing for a while not only because we knew nothing about CF but also because we went through 2 doctors and wasted lots of time. But, looking back I am just sooo glad that my daughter is doing great and nothing else was wrong with her. I am happy she is walking and has perfect little feet. CF is fixable and really small compared to what other parents have had to endure. Enjoy your little girl and remember you are not at all selfish for the decision you made! Best Wishes, and BL CF 12/16/03 > I've read that some of you found out about your babies clubfeet in an > ultrasound. At my 20 week ultrasound I did not want to know the sex, > so the tech did not look at the whole baby so we wouldn't accidently > see anything. She did measure a thigh bone but went right back above > the waist. Now I am beating myself up thinking that if I hadn't wanted > it to be a secret, there's a chance we might have known about her feet > before she was born. Then we would have done all the research and got > the right care sooner. Did most of you know before birth? I'm really > having a hard time with this and feel that because of a selfish > decision I put my baby behind in getting the right treatment. > > Marci > > Mollie 5-25-05 bcf Quote Link to comment Share on other sites More sharing options...
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