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...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 I didn't know-and we knew the sex. I am going to talk to my doctor and find out if it was known on the 20 week US-also going to request more US in future pregnancies just so we can be prepared! Kathleen mom to 8/28/04 bcf fab 14/7 > 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 didn't know-and we knew the sex. I am going to talk to my doctor and find out if it was known on the 20 week US-also going to request more US in future pregnancies just so we can be prepared! Kathleen mom to 8/28/04 bcf fab 14/7 > 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 Hey Marci, I wanted to let you know that I also had several ultra-sounds more then usual, even some at the anti-natal testing unit looking for " problems " and none of the several places I went to saw Collin's clubfoot. They did guess his sex right though. I'm so sorry for everything your feeling, it is truly not your faught that the baby has clubfeet. I think even if they did look for the sex of the baby they may have not seen it. I know it can be hard at first, I had a lot of feeling of guilt at first, trying to figure out if I " bent " wrong in the garden, etc..I use to beat myself up. I pray that all the feelings your having now will pass soon. I'm sure talking will help a lot. Michele Collin's story at http://www.geocities.com/chele323232 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 Hey Marci, I wanted to let you know that I also had several ultra-sounds more then usual, even some at the anti-natal testing unit looking for " problems " and none of the several places I went to saw Collin's clubfoot. They did guess his sex right though. I'm so sorry for everything your feeling, it is truly not your faught that the baby has clubfeet. I think even if they did look for the sex of the baby they may have not seen it. I know it can be hard at first, I had a lot of feeling of guilt at first, trying to figure out if I " bent " wrong in the garden, etc..I use to beat myself up. I pray that all the feelings your having now will pass soon. I'm sure talking will help a lot. Michele Collin's story at http://www.geocities.com/chele323232 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2005 Report Share Posted August 20, 2005 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 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, I also did not find out until after my son was born about his clubfoot - and I live in Iowa City (Ponseti Method Central). In our case, it was the nurse in the nursery who told me about his clubfeet several hours after he was born. Jakob had casts (although surprisingly NOT Ponseti Method casts) by the time he was 24 hours old. At one week old, the first orthopedist referred us to Dr. Weinstein (a colleague of Dr. Ponseti's) which was the best thing he ever did for us. Jakob is now 7 1/2 and will be starting 2nd grade on Monday. Until his most recent follow up in April 2005, no one at his school was aware of it. I only told his teacher then because she was questiong Jakob's report of the appointment ( " The doctor says my feet are just excellent. " ) . 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 Marci, I also did not find out until after my son was born about his clubfoot - and I live in Iowa City (Ponseti Method Central). In our case, it was the nurse in the nursery who told me about his clubfeet several hours after he was born. Jakob had casts (although surprisingly NOT Ponseti Method casts) by the time he was 24 hours old. At one week old, the first orthopedist referred us to Dr. Weinstein (a colleague of Dr. Ponseti's) which was the best thing he ever did for us. Jakob is now 7 1/2 and will be starting 2nd grade on Monday. Until his most recent follow up in April 2005, no one at his school was aware of it. I only told his teacher then because she was questiong Jakob's report of the appointment ( " The doctor says my feet are just excellent. " ) . 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 Marci - You can't beat yourself up over this. How many people in this world decide not to find out what they are having prior to giving birth? That's not a selfish decision to make at all, it's one that many, many people make. There are many people who do find out early on that there child will be born with clubfoot - and still aren't able to find a treatment option that works for their child. Please stop thinking you could have done something different - you're a good Mommy! Holly Zachary 7/27/02 Right C/F Treated by Dr. Ponseti DBB Nights Only > 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 - You can't beat yourself up over this. How many people in this world decide not to find out what they are having prior to giving birth? That's not a selfish decision to make at all, it's one that many, many people make. There are many people who do find out early on that there child will be born with clubfoot - and still aren't able to find a treatment option that works for their child. Please stop thinking you could have done something different - you're a good Mommy! Holly Zachary 7/27/02 Right C/F Treated by Dr. Ponseti DBB Nights Only > 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 Thank you to everyone who replied to my post. I really do feel much better about it now. 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 Thank you to everyone who replied to my post. I really do feel much better about it now. 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 21, 2005 Report Share Posted August 21, 2005 Hi Marci, I have a similar story.. not finding out the sex of my son either. I am actually glad I didn't know about the club foot because I would have worried myself sick that something else was wrong and not just a little footsie that can easily be corrected. Also, I read somewhere that many times people get ultrasounds and techs can not tell a child's foot is clubbed until a certain stage of development. So for you and me, our babies feet might have looked fine at the time they did the ultrasound. I know it is hard. Lori _____ From: nosurgery4clubfoot [mailto:nosurgery4clubfoot ] On Behalf Of Holly Sent: Saturday, August 20, 2005 7:41 PM To: nosurgery4clubfoot Subject: Re: did you know? Marci - You can't beat yourself up over this. How many people in this world decide not to find out what they are having prior to giving birth? That's not a selfish decision to make at all, it's one that many, many people make. There are many people who do find out early on that there child will be born with clubfoot - and still aren't able to find a treatment option that works for their child. Please stop thinking you could have done something different - you're a good Mommy! Holly Zachary 7/27/02 Right C/F Treated by Dr. Ponseti DBB Nights Only > 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 21, 2005 Report Share Posted August 21, 2005 Hi Marci, I have a similar story.. not finding out the sex of my son either. I am actually glad I didn't know about the club foot because I would have worried myself sick that something else was wrong and not just a little footsie that can easily be corrected. Also, I read somewhere that many times people get ultrasounds and techs can not tell a child's foot is clubbed until a certain stage of development. So for you and me, our babies feet might have looked fine at the time they did the ultrasound. I know it is hard. Lori _____ From: nosurgery4clubfoot [mailto:nosurgery4clubfoot ] On Behalf Of Holly Sent: Saturday, August 20, 2005 7:41 PM To: nosurgery4clubfoot Subject: Re: did you know? Marci - You can't beat yourself up over this. How many people in this world decide not to find out what they are having prior to giving birth? That's not a selfish decision to make at all, it's one that many, many people make. There are many people who do find out early on that there child will be born with clubfoot - and still aren't able to find a treatment option that works for their child. Please stop thinking you could have done something different - you're a good Mommy! Holly Zachary 7/27/02 Right C/F Treated by Dr. Ponseti DBB Nights Only > 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 21, 2005 Report Share Posted August 21, 2005 Hi Marci, Lori et all, I could probably win the booby prize for the beat-yourself-up contest when we found out is had bilateral cf at the 20 week utrasound. And I did find out the sex and knew about the cf :-{. I wish I would have know about this group then. I said this previously but we are American and were living in London at the time. We actually had a doctor or " consultant " as they are known there doing the ultrasound scans. He had previously been an obgyn but enjoyed the us technology and no late on calls with growing children so he switched careers. We had my 8 year old son in the room with us and we noticed he was spending alot of time looking at the feet. He asked us to come back again in a week and calmly said there were some areas he couldn't get because of the position of the baby so we didn't think anything of it but fortunately didn't bring our son back when he told us the news, thank god as it was quite traumatc for us. He said that talipes is hard to catch on ultrasound, especially if the position of the baby isn't quite right, with baby moving around etc. Usually they are looking for potentially more urgent issues concerning heart, brain, other organs, blood flow etc and just don't always get the time to be as thorough on the feet. This was a radiologist even, not the tech. I played the beat up game right through her birth and into casting. We were in a clinic at Chelsea Westminster hospital in London with a Ponsetti certified orthopedic surgen. It wasn't until then that I realized just how fortunate we were. There were children there from all over the world who had been treated incorrectly, some for several years, who were seeking the Ponsetti method. One child came from the ines, her family moved to London when she was 3 as she could not walk her treatment had been so poor. They had recast her etc, she was in the brace and was running around the office!! So even if somehow any of our children got off on slightly the wrong start on correction or slow detection, you're on the right track now which is the most important thing! - p.s. The UK radiologist had never heard of the Ponsetti method and was very interested to follow the progress. We send him pictures of the treatment, results and now he uses it in his lectures to make sure others in the UK know of the method :-} > > 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 21, 2005 Report Share Posted August 21, 2005 Hi Marci, Lori et all, I could probably win the booby prize for the beat-yourself-up contest when we found out is had bilateral cf at the 20 week utrasound. And I did find out the sex and knew about the cf :-{. I wish I would have know about this group then. I said this previously but we are American and were living in London at the time. We actually had a doctor or " consultant " as they are known there doing the ultrasound scans. He had previously been an obgyn but enjoyed the us technology and no late on calls with growing children so he switched careers. We had my 8 year old son in the room with us and we noticed he was spending alot of time looking at the feet. He asked us to come back again in a week and calmly said there were some areas he couldn't get because of the position of the baby so we didn't think anything of it but fortunately didn't bring our son back when he told us the news, thank god as it was quite traumatc for us. He said that talipes is hard to catch on ultrasound, especially if the position of the baby isn't quite right, with baby moving around etc. Usually they are looking for potentially more urgent issues concerning heart, brain, other organs, blood flow etc and just don't always get the time to be as thorough on the feet. This was a radiologist even, not the tech. I played the beat up game right through her birth and into casting. We were in a clinic at Chelsea Westminster hospital in London with a Ponsetti certified orthopedic surgen. It wasn't until then that I realized just how fortunate we were. There were children there from all over the world who had been treated incorrectly, some for several years, who were seeking the Ponsetti method. One child came from the ines, her family moved to London when she was 3 as she could not walk her treatment had been so poor. They had recast her etc, she was in the brace and was running around the office!! So even if somehow any of our children got off on slightly the wrong start on correction or slow detection, you're on the right track now which is the most important thing! - p.s. The UK radiologist had never heard of the Ponsetti method and was very interested to follow the progress. We send him pictures of the treatment, results and now he uses it in his lectures to make sure others in the UK know of the method :-} > > 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 21, 2005 Report Share Posted August 21, 2005 I did find out at 5 months and started doing research right away!!!! Marci, please don't beat yourself up about it. Don't waste time on the shoulda, coulda, woulda. I'm sure you're doing the best job you can now and they're so resiliant she'll catch up quickly... You know back in the day there wasn't such thing as ultrasound so your actions were perfectly normal.. Hugs, Jenn 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 21, 2005 Report Share Posted August 21, 2005 I did find out at 5 months and started doing research right away!!!! Marci, please don't beat yourself up about it. Don't waste time on the shoulda, coulda, woulda. I'm sure you're doing the best job you can now and they're so resiliant she'll catch up quickly... You know back in the day there wasn't such thing as ultrasound so your actions were perfectly normal.. Hugs, Jenn 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 22, 2005 Report Share Posted August 22, 2005 I agree with ee that " knowing " was in the end a good thing because it helped us be prepared for Lily's treatment. *However*, the radiologist (one of the best in the country, co-author of a standard text on ultrasound) scared the heck out of us when he discovered her clubfoot at an 18 week ultrasound. He went right into all the 200+ other things that can be associated with clubfoot, emphasizing that some of them were fatal and urging us to get an amnio asap. This scare made us uneasy during the rest of the pregnacy (in spite of the reassurance we received from a genetic counselor and the gazillion ultrasounds the perinatalogists did to look for something else, since we decided against the amnio). So in the end I'm glad we knew, but could have definitely done without the fear mongering radiologist. And Marci, let me get on the bandwagon & encourage you in your quest to ease up on yourself. Your little sweetie has a great Mom! You're on the right path and your little one is still a little shy of three months old, right? I'm sure the short delay you had in getting the right treatment will soon be a distant memory. There are so many kiddos out there who started with the Ponseti method much later and are doing terrific. Give yourself a virtual hug from all of us. Kim Lily, 3/28/05, lcf, 23/7 P/M FAB (down to 20 hours tomorrow!!!!) Tessa, 7/17/02 > > >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 22, 2005 Report Share Posted August 22, 2005 I agree with ee that " knowing " was in the end a good thing because it helped us be prepared for Lily's treatment. *However*, the radiologist (one of the best in the country, co-author of a standard text on ultrasound) scared the heck out of us when he discovered her clubfoot at an 18 week ultrasound. He went right into all the 200+ other things that can be associated with clubfoot, emphasizing that some of them were fatal and urging us to get an amnio asap. This scare made us uneasy during the rest of the pregnacy (in spite of the reassurance we received from a genetic counselor and the gazillion ultrasounds the perinatalogists did to look for something else, since we decided against the amnio). So in the end I'm glad we knew, but could have definitely done without the fear mongering radiologist. And Marci, let me get on the bandwagon & encourage you in your quest to ease up on yourself. Your little sweetie has a great Mom! You're on the right path and your little one is still a little shy of three months old, right? I'm sure the short delay you had in getting the right treatment will soon be a distant memory. There are so many kiddos out there who started with the Ponseti method much later and are doing terrific. Give yourself a virtual hug from all of us. Kim Lily, 3/28/05, lcf, 23/7 P/M FAB (down to 20 hours tomorrow!!!!) Tessa, 7/17/02 > > >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 22, 2005 Report Share Posted August 22, 2005 Not to " beat the dead horse " anymore, but I wanted to throw my 2 cents in also.... FYI- when I was pg with , I had 2 ultrasounds and the cf wasn't detected, though her sex was. After she was born, though, I remembered that they told me that she was " sitting " on her one leg- they were talking about this as they were trying to get a good shot to determine the sex- not that they were trying to get a view of the leg and foot. Months later, I asked our very cool pediatrician to review the ultrasound tapes and pictures just to see if it had been present at the earlier u/s (I told him that I wanted to try to pinpoint when it developed in order to try to determine how severe it was- not that I was faulting the staff for not diagnosing it). He told me that they had shots of the leg and shots of the foot, but no shots of the leg and the foot together. I also had Dr. P review the ultrasound records and he had the same conclusion. At that hospital, the ultrasound technicians weren't instructed to specifically look for clubfoot according to the pediatrician. In my subsequent two pregnancies, whenever I'd have an ultrasound, I would ask the technicians if they would usually look for clubfoot. All of them said " no " . So, I guess that unless they happen to get a good shot of the legs/feet- it's not going to be caught via ultrasound (or if that particular technician has " found " one or more cases during their career- maybe they'd be more inclined to look for that particular anomaly). So many babies are curled up in a ball, have their legs crossed, or are kicking and moving all the time- I guess it'd be hard to say how many times one could actually " catch " clubfoot just during a regular routine ultrasound. They really spend their time trying to get all the important measurements done and diagnosing potentially " major " issues- so clubfoot isn't too important........except to those of us with family history or prior children with clubfoot- and *then* we have to have the level 2 pointed u/s to rule it out. Like ee, I had asked for it to be ruled out with my next two pregnancies- only because I wanted to make " treatment/travel plans " for my maternity leave, but not because I was worried about dealing with it per se. Have a good one! & (3-16-00, left clubfoot) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Actually, I was totally thinking of you when I wrote this ee. Like I said--I can completely understand why some people would want to find out, especially if you have to travel a great distance for treatment. Or even if you just *want* to know! But we're only 35 mins from her doc, so we really don't need much more than a babysitter for the morning. But I realize I'm probably in the minority here! :-) > > >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 26, 2005 Report Share Posted August 26, 2005 Marci our stories couldnt be more alike. I didnt find out about my daughters bcf until she was born either. Mollie and Sydney were acutally born on the same day.I went through the very same guilty feeling and now i wouldnt change any of it for the world. We got quick and wonderful Ponsetti treatment. Be happy and enjoy her. it will all be ok mom to Sydney 5/25/05 23/7 Dobbs Brace __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Marci our stories couldnt be more alike. I didnt find out about my daughters bcf until she was born either. Mollie and Sydney were acutally born on the same day.I went through the very same guilty feeling and now i wouldnt change any of it for the world. We got quick and wonderful Ponsetti treatment. Be happy and enjoy her. it will all be ok mom to Sydney 5/25/05 23/7 Dobbs Brace __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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