Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Hi Jane! At one point, there was a question of my daughter having a hemivertebrae, too. (however, she does not.) And, all those issues were cleared up with the MRI. That will give you a lot of information and help direct you om how to proceed..... It sounds like you are on the right track. Noelle's questionable vertebra was also in the ribcage area and surgery was also suggested as a likely possibility in order to correct. Keep us posted on her MRI and good luck! Steph Jane Bigler wrote: Hello everyone, here's a little about us. My name is Jane and my daughter Grace was born with an omphalocele. This is basically a hernia at the umbilical cord because the abdominal wall didn't close. She had surgery the day after she was born and spent 9 days in the NICU. Her " O " as we call it, was diagnosed at my routine 20 week u/sound. Due to the fact that this anomaly can be a side-effect of various genetic disorders, we had an amnio. No genetic markers showed up. this was a huge relief, but still didn't tell us everything we would face when she was born. Luckily we had great dr's and were never encouraged to terminate. Thank GOD! Many other mom's with babies born wth " O's " are encouraged to terminate. Grace came through her initial surgery with flying colors, it was the day after she was born and was eating and breathing on her own within a few days and home on day 9. This is just about a record in the " O " community, most babies are in the hospital at a minimum of 3-4 months after birth. Anyhow, Grace's first 24 hours of life was very busy with the various tests they had to run. One thing they did was to x-ray her entire body. This is when her hemi-vertabrae was discovered. This is located in her ribcage area. She also has an additional full vertabra in the lumbar region. She has been followed by a pediatric orthopedist every 3-4 months since she was born. Grace is now 18 months. Her curve has continued to be between 25-30 degrees. We noticed at her appt in October that the areas above and below the partial vertabra were begining to twist. However by this last month, it was clear they weren't twisting, but curving in opposite directions from the abnormal spot. The lower spine is curving significantly more. I also had noted that Grace had began falling strangely. Like if she was getting a pain or somethingin her back making her stand up straight and then ultimately fall over. It doesn't happen often so there is concern that her spinal cord is getting pinched periodically. So we have an MRI scheduled for 3/31. we will then have a followup again in June and most likely be talking about surgery to fuse the partial bone. I have searched for a support site for this since I first found out about Grace having scoliosis but was unsuccessful, but finally ran across this yesterday. I already belong to a great group for Grace's " O " called the MOO's (mothers of omphalocele). I know you all will be as helpful and caring as they have been to me. Btw, we live in Portland Oregon and wonder if anyone else is from this area? Thanks in advance for all your help. Jane - Mommy to... Grant Kelley, 5 yrs old and Grace , 18 months. --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 , thanks for the welcome. I don't think there is really any question of if it is a hemi as we can clearly see it on all of her x-rays. It is triangular shaped and very obvious. I'll be sure to keep everyone posted though. Jane Kauffunger wrote: Hi Jane! At one point, there was a question of my daughter having a hemivertebrae, too. (however, she does not.) And, all those issues were cleared up with the MRI. That will give you a lot of information and help direct you om how to proceed..... It sounds like you are on the right track. Noelle's questionable vertebra was also in the ribcage area and surgery was also suggested as a likely possibility in order to correct. Keep us posted on her MRI and good luck! Steph Jane Bigler wrote: Hello everyone, here's a little about us. My name is Jane and my daughter Grace was born with an omphalocele. This is basically a hernia at the umbilical cord because the abdominal wall didn't close. She had surgery the day after she was born and spent 9 days in the NICU. Her " O " as we call it, was diagnosed at my routine 20 week u/sound. Due to the fact that this anomaly can be a side-effect of various genetic disorders, we had an amnio. No genetic markers showed up. this was a huge relief, but still didn't tell us everything we would face when she was born. Luckily we had great dr's and were never encouraged to terminate. Thank GOD! Many other mom's with babies born wth " O's " are encouraged to terminate. Grace came through her initial surgery with flying colors, it was the day after she was born and was eating and breathing on her own within a few days and home on day 9. This is just about a record in the " O " community, most babies are in the hospital at a minimum of 3-4 months after birth. Anyhow, Grace's first 24 hours of life was very busy with the various tests they had to run. One thing they did was to x-ray her entire body. This is when her hemi-vertabrae was discovered. This is located in her ribcage area. She also has an additional full vertabra in the lumbar region. She has been followed by a pediatric orthopedist every 3-4 months since she was born. Grace is now 18 months. Her curve has continued to be between 25-30 degrees. We noticed at her appt in October that the areas above and below the partial vertabra were begining to twist. However by this last month, it was clear they weren't twisting, but curving in opposite directions from the abnormal spot. The lower spine is curving significantly more. I also had noted that Grace had began falling strangely. Like if she was getting a pain or somethingin her back making her stand up straight and then ultimately fall over. It doesn't happen often so there is concern that her spinal cord is getting pinched periodically. So we have an MRI scheduled for 3/31. we will then have a followup again in June and most likely be talking about surgery to fuse the partial bone. I have searched for a support site for this since I first found out about Grace having scoliosis but was unsuccessful, but finally ran across this yesterday. I already belong to a great group for Grace's " O " called the MOO's (mothers of omphalocele). I know you all will be as helpful and caring as they have been to me. Btw, we live in Portland Oregon and wonder if anyone else is from this area? Thanks in advance for all your help. Jane - Mommy to... Grant Kelley, 5 yrs old and Grace , 18 months. --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Hi Jane It's great that you are doing lots of research - opinions between doctors can vary, and the treatment decision is ultimately ours, making it so important to have ALL our questions answered. Many parents use Shriners because their doctors have specialized in Orthopedics and Children - the best combination We use Shriners because we don't have health insurance in the U.S., and we needed a doctor to try casting to stall my little girls very progressive scoliosis, and her ortho here in Vancouver was " old school " wanting to brace and fuse her spine, way before we were ready to consider that as an option! The care/treatment there is absolutely wonderful - We LOVE Shriners! My daughter actually looks forward to going! She's 8 yrs old now, and we've been going for 4+ years. Keep searching for the right treatment plan for Grace. Best wishes, Jacki > > > > > > Hello everyone, here's a little about us. > > > > > > My name is Jane and my daughter Grace was born > > with an omphalocele. > > This is basically a > > > hernia at the umbilical cord because the abdominal > > wall didn't > > close. She had surgery the > > > day after she was born and spent 9 days in the > > NICU. Her " O " as we > > call it, was diagnosed > > > at my routine 20 week u/sound. Due to the fact > > that this anomaly > > can be a side-effect of > > > various genetic disorders, we had an amnio. No > > genetic markers > > showed up. this was a > > > huge relief, but still didn't tell us everything > > we would face when > > she was born. Luckily we > > > had great dr's and were never encouraged to > > terminate. Thank GOD! > > Many other mom's > > > with babies born wth " O's " are encouraged to > > terminate. Grace came > > through her initial > > > surgery with flying colors, it was the day after > > she was born and > > was eating and breathing > > > on her own within a few days and home on day 9. > > This is just about > > a record in the " O " > > > community, most babies are in the hospital at a > > minimum of 3-4 > > months after birth. > > > > > > Anyhow, Grace's first 24 hours of life was very > > busy with the > > various tests they had to run. > > > One thing they did was to x-ray her entire body. > > This is when her > > hemi-vertabrae was > > > discovered. This is located in her ribcage area. > > She also has an > > additional full vertabra in > > > the lumbar region. > > > > > > She has been followed by a pediatric orthopedist > > every 3-4 months > > since she was born. > > > Grace is now 18 months. Her curve has continued > > to be between 25- > > 30 degrees. We > > > noticed at her appt in October that the areas > > above and below the > > partial vertabra were > > > begining to twist. However by this last month, it > > was clear they > > weren't twisting, but > > > curving in opposite directions from the abnormal > > spot. The lower > > spine is curving > > > significantly more. > > > > > > I also had noted that Grace had began falling > > strangely. Like if > > she was getting a pain or > > > somethingin her back making her stand up straight > > and then > > ultimately fall over. It > > > doesn't happen often so there is concern that her > > spinal cord is > > getting pinched > > > periodically. So we have an MRI scheduled for > > 3/31. we will then > > have a followup again in > > > June and most likely be talking about surgery to > > fuse the partial > > bone. > > > > > > I have searched for a support site for this since > > I first found out > > about Grace having > > > scoliosis but was unsuccessful, but finally ran > > across this > > yesterday. I already belong to a > > > great group for Grace's " O " called the MOO's > > (mothers of > > omphalocele). I know you all will > > > be as helpful and caring as they have been to me. > > > > > > Btw, we live in Portland Oregon and wonder if > > anyone else is from > > this area? > > > > > > Thanks in advance for all your help. > > > > > > Jane - Mommy to... > > > Grant Kelley, 5 yrs old and Grace , 18 > > months. > > > > > > > > > > > > Jane > > > > ______________________________________________________________________ ______________ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.