Re: My Unborn baby has Scoliosis

[Guest guest]

Hi ,

No problem.... You can ask me anything at any time.... Don't worry about the scoli in utero for now progressing. We see a geneticist who explained that scoli can be caused by conditions in utero sometimes if there is any crowding from a twin, uterine fibroid or low amniotic fluid. Most of our kids have had MRIs and ultrasounds, so it's good that you are prepared for that ahead of time. It's really standard procedure and that can be done at your local hospital. You can find the contact info. for all the Mehta docs on our link to this web page. We actually go to Rochester so I'm not familiar with that facility.... Maybe another mom will chime in about that. Noelle's RVAD was up to about 30 at one point and her scoli was 39 degrees when diagnosed at 11 months. She was casted at 18 months when her curvature was between 45 and 50 degrees. She's down to 17 degrees and just

started cast number 4.... She's doing great! Our doc didn't see her scoli on the ultrasound and my pregnancy was high risk..... I had an ultrasound every 2 weeks (about 20 in all). I knew something was wrong at birth, but because this is so rare most pediatricians and ob-gyns don't "look" for it, I guess. If you want to speak over the phone, you can e-mail me off-line and I will give you my number. Sometimes it helps to have a contact for those crazy times.... We all can relate to that! It was hard for me to know that Noelle was born with a birth defect that took 11 months to diagnose and I felt like an awful mother for not pursuing her bulging rib-cage sooner. I never expected this and I trusted what my pediatrician was telling me believing that he knew better than I did. There is no accounting for the power and intuition of a mother's instinct. You already know your baby better

than any doctor. If you feel your baby is fine with the exception of the scoli, then you should have faith in that. And, I don't know if I mentioned it in my previous post, but most scoli cases do resolve on their own... Your child's might do that! You have to have faith in that possibility as well even as you prepare for the possibility that it could progress. I have been keeping you in my prayers since your post and I will continue to do that.... I meant what I said about calling me as well.... Please do not hesitate.... Steph

Subject: Re: My Unborn baby has ScoliosisTo: infantile_scoliosis Date: Wednesday, October 22, 2008, 8:01 PM

Hi Steph,Thank you for replying. I have already been informed of a Mehta doctor in SC named Dr. Stasikelis. I just need to know how to apply and get his contact information to start sending him the MRI, ultrasounds my daughter has had and make an appointment for her to see him soon after shes born. I live in south Florida so I will have to fly up there from time to time but that is fine, I will do anything for her to seek the right treatment. I hope it's just infantile scoli and nothing more. I hope your daughter Noelle gets out of her cast soon. What was her degree before the cast? I wish I knew the degree of my daughtes but nobody really can tell me till she's born its just said to be mild to moderate at the moment. She needs xrays and an mri after shes born. I wonder if the scoliosis being inside the womb all tight up in there will make her scoliosis worse? I've been thinking of that

lately. I know at some angles during ultrasound her spine looked perfect and its something the tech had to keep looking for to see it the 2nd time around.> > From: sweettartmommy

<sweettartmommy@ ...>> Subject: [infantile_scoliosi s] My Unborn baby has Scoliosis> To: infantile_scoliosis @yahoogroups. com> Date: Saturday, October 18, 2008, 4:41 PM> > > > > > > Hello all my name is , married to a wonderful man and > together we have 2 kids. My daughter is 4 and my son is 3 they are > the joy of our life. I will try and make this short. At my 18 week > ultrasound we found out we are having a girl and at my 20 week > ultrasound my OB told me the ultrasound showed a spec in the heart > which is very normal and common in healthy babies and to not worry > but she wanted to get it checked on. Then she went to tell me the > tech wrote she wasn't able to see the spine too well. I saw the > spine and it looked fine to

me but I remember asking her to make > sure there was no spina bifida. Reason I asked that I always have > because a good old friend of mine was born with it. Well at 21 weeks > I had a level 2 ultrasound with a MFM doctor. No spec was seen but > baby's spine looked a little different I thought it was just the way > she was laying. Well the tech called the MFM doctor and he looked > and looked and told me the worse news I have ever heard. My daughter > has kyphoscoliosis and I asked what it was he said a curve on the > spine. I asked will she be able to walk he said most likely yes but > that's not the point. He told me she was going to walk with her hip > to one side and her neck to the other. Made her look like she was > going to be a freak. I just started crying. He asked the tech to > look at everything else in front of him. Kidneys, heart, brain,

> lips, limbs... etc.. He told me other then this she has no other > problems. If you want to terminate you and your husband can seek > consulting before and after. I wanted to die! I researched so much > after that. I saw him on a Thursday and then Monday I went in to see > my ob and told her I wanted a 2nd opinion. The next day I saw > another MFM. First the ultrasound was done by a tech at first the > spine looked normal and my husband even said the same. I knew she > had the curve since I had saw it before. The tech said the spine > looks normal but she kept twisting and looking around and then we > saw the curve. She has never seen scoliosis on ultrasound before. > She told me it looks different and that the doctor will come in and > take a look. The Dr asked her to do a 3d/4d of the baby we were able > to see everything so much clearer.

Everything on her spine is align. > The Dr came in and she looked herself very carefully told me the > curve is appearing on L1 & L2 and maybe T12 but wasn't sure. All the > vertebraes are on her spine. I even asked her to check the ribs > because of everything I have read. She has all her ribs and they are > align as well.> > She then told me about the spec again on the heart and how she said > its a soft marker for down syndrome and asked me if I wanted to get > an amnio test and I rejected because of risks of going into pre-term > labor and or miscarriage. She told me the curve looks mild to > moderate and that it can or might not get worse.> I saw a cardiac for an echo of the baby's heart (BTW we have named > her t).. we saw 2 specs there instead of 1 but he assured me > that doesn't mean its a higher marker for down

syndrome and that it > almost always goes away before birth, its just like a birth mark. > Her heart is normal thank God.> > I then talked to many other parents who told me they got an amnio > done after finding out about the scoliosis so my husband and I > talked about it an thought it would be best to have one less worry > in our mind. I also read my medical report on the last ultrasound > that the Dr suspected Vater because of a suggestion of a > hemivertebrae on L2 the point of greatest angulation. Also said > since the "stomach bubble" wasn't seen she was thinking the baby > might have TE fistual with is associated with Vater. She also added > there may be an occult spinal dysaphism that is not apparent yet and > may not be detected until after delivery. Then she typed at the > bottom. However assuming that this is an isolated, relatively

mild > to moderate kyphosis, I would anticipate an ultimately good outcome, > although some type of surgical intervention will likely be needed.> Of course I went nuts after reading this and I called her right > away. She called me back that night and just told me she wasn't > hiding anything from me just thought of that after I left. That she > didn't see any problems with a hemi-v but ultrasound is never always > correct. I told her I wanted an amnio and I wanted to double check > that stomach bubble was present since it was at the other MFM's > office. She said that was fine and to call Monday morning to come > in. (Friday was when I spoke to her).> > Monday morning came and I went, checked for the stomach bubble and > it was there and normal size thank God. Had the fish and amnio done > as well and got an appointment for an MRI to check

on everything but > mainly on the spine of the baby. Well the MRi was about 45mins but > felt much longer. I got a call from my MFM the next day and told me > everything on the MRI looks normal and the spine is seen with the > scoliosis but they were not able to tell if there was a problem with > a hemi-V since shes still so small. Ugh. She told me that since she > didn't see anything wrong and they didn't either with that part then > most likely she has no hemi-v problems. I really think they aren't > seeing anything with the hemi-v but can't rule it out just in case. > That same day I received a call from her office telling me the FISH > results was normal. I am now waiting for the amnio results which I > have faith is normal as well. > > I have seen most of the photos on here of babies being helped with > the casting and it

gives me so much hope that this can be corrected. > I am however sadden that baths and trips to the pool will be a no > no. This is things we all take for granted. I am hoping casting is > all she will need to be corrected. I am hoping this does not > progress. I did think about terminating if something else was found > but since everything else is normal we can deal with this. We love > her very much and will do everything to seek treatment for her. > Anyone's baby was born with scoliosis? Was it very noticeable? I > don't want my daughter being born and then a ton of nurses and > doctors look at her as if she was a study monkey.> > Sorry longer then what I thought it would be. I wait on your reply's.> > > > > > > > > > > > > > > > >

____________ _________ _________ _________ _________ __>

[Guest guest]

Hi ,

No problem.... You can ask me anything at any time.... Don't worry about the scoli in utero for now progressing. We see a geneticist who explained that scoli can be caused by conditions in utero sometimes if there is any crowding from a twin, uterine fibroid or low amniotic fluid. Most of our kids have had MRIs and ultrasounds, so it's good that you are prepared for that ahead of time. It's really standard procedure and that can be done at your local hospital. You can find the contact info. for all the Mehta docs on our link to this web page. We actually go to Rochester so I'm not familiar with that facility.... Maybe another mom will chime in about that. Noelle's RVAD was up to about 30 at one point and her scoli was 39 degrees when diagnosed at 11 months. She was casted at 18 months when her curvature was between 45 and 50 degrees. She's down to 17 degrees and just

started cast number 4.... She's doing great! Our doc didn't see her scoli on the ultrasound and my pregnancy was high risk..... I had an ultrasound every 2 weeks (about 20 in all). I knew something was wrong at birth, but because this is so rare most pediatricians and ob-gyns don't "look" for it, I guess. If you want to speak over the phone, you can e-mail me off-line and I will give you my number. Sometimes it helps to have a contact for those crazy times.... We all can relate to that! It was hard for me to know that Noelle was born with a birth defect that took 11 months to diagnose and I felt like an awful mother for not pursuing her bulging rib-cage sooner. I never expected this and I trusted what my pediatrician was telling me believing that he knew better than I did. There is no accounting for the power and intuition of a mother's instinct. You already know your baby better

than any doctor. If you feel your baby is fine with the exception of the scoli, then you should have faith in that. And, I don't know if I mentioned it in my previous post, but most scoli cases do resolve on their own... Your child's might do that! You have to have faith in that possibility as well even as you prepare for the possibility that it could progress. I have been keeping you in my prayers since your post and I will continue to do that.... I meant what I said about calling me as well.... Please do not hesitate.... Steph

Subject: Re: My Unborn baby has ScoliosisTo: infantile_scoliosis Date: Wednesday, October 22, 2008, 8:01 PM

Hi Steph,Thank you for replying. I have already been informed of a Mehta doctor in SC named Dr. Stasikelis. I just need to know how to apply and get his contact information to start sending him the MRI, ultrasounds my daughter has had and make an appointment for her to see him soon after shes born. I live in south Florida so I will have to fly up there from time to time but that is fine, I will do anything for her to seek the right treatment. I hope it's just infantile scoli and nothing more. I hope your daughter Noelle gets out of her cast soon. What was her degree before the cast? I wish I knew the degree of my daughtes but nobody really can tell me till she's born its just said to be mild to moderate at the moment. She needs xrays and an mri after shes born. I wonder if the scoliosis being inside the womb all tight up in there will make her scoliosis worse? I've been thinking of that

lately. I know at some angles during ultrasound her spine looked perfect and its something the tech had to keep looking for to see it the 2nd time around.> > From: sweettartmommy

<sweettartmommy@ ...>> Subject: [infantile_scoliosi s] My Unborn baby has Scoliosis> To: infantile_scoliosis @yahoogroups. com> Date: Saturday, October 18, 2008, 4:41 PM> > > > > > > Hello all my name is , married to a wonderful man and > together we have 2 kids. My daughter is 4 and my son is 3 they are > the joy of our life. I will try and make this short. At my 18 week > ultrasound we found out we are having a girl and at my 20 week > ultrasound my OB told me the ultrasound showed a spec in the heart > which is very normal and common in healthy babies and to not worry > but she wanted to get it checked on. Then she went to tell me the > tech wrote she wasn't able to see the spine too well. I saw the > spine and it looked fine to

me but I remember asking her to make > sure there was no spina bifida. Reason I asked that I always have > because a good old friend of mine was born with it. Well at 21 weeks > I had a level 2 ultrasound with a MFM doctor. No spec was seen but > baby's spine looked a little different I thought it was just the way > she was laying. Well the tech called the MFM doctor and he looked > and looked and told me the worse news I have ever heard. My daughter > has kyphoscoliosis and I asked what it was he said a curve on the > spine. I asked will she be able to walk he said most likely yes but > that's not the point. He told me she was going to walk with her hip > to one side and her neck to the other. Made her look like she was > going to be a freak. I just started crying. He asked the tech to > look at everything else in front of him. Kidneys, heart, brain,

> lips, limbs... etc.. He told me other then this she has no other > problems. If you want to terminate you and your husband can seek > consulting before and after. I wanted to die! I researched so much > after that. I saw him on a Thursday and then Monday I went in to see > my ob and told her I wanted a 2nd opinion. The next day I saw > another MFM. First the ultrasound was done by a tech at first the > spine looked normal and my husband even said the same. I knew she > had the curve since I had saw it before. The tech said the spine > looks normal but she kept twisting and looking around and then we > saw the curve. She has never seen scoliosis on ultrasound before. > She told me it looks different and that the doctor will come in and > take a look. The Dr asked her to do a 3d/4d of the baby we were able > to see everything so much clearer.

Everything on her spine is align. > The Dr came in and she looked herself very carefully told me the > curve is appearing on L1 & L2 and maybe T12 but wasn't sure. All the > vertebraes are on her spine. I even asked her to check the ribs > because of everything I have read. She has all her ribs and they are > align as well.> > She then told me about the spec again on the heart and how she said > its a soft marker for down syndrome and asked me if I wanted to get > an amnio test and I rejected because of risks of going into pre-term > labor and or miscarriage. She told me the curve looks mild to > moderate and that it can or might not get worse.> I saw a cardiac for an echo of the baby's heart (BTW we have named > her t).. we saw 2 specs there instead of 1 but he assured me > that doesn't mean its a higher marker for down

syndrome and that it > almost always goes away before birth, its just like a birth mark. > Her heart is normal thank God.> > I then talked to many other parents who told me they got an amnio > done after finding out about the scoliosis so my husband and I > talked about it an thought it would be best to have one less worry > in our mind. I also read my medical report on the last ultrasound > that the Dr suspected Vater because of a suggestion of a > hemivertebrae on L2 the point of greatest angulation. Also said > since the "stomach bubble" wasn't seen she was thinking the baby > might have TE fistual with is associated with Vater. She also added > there may be an occult spinal dysaphism that is not apparent yet and > may not be detected until after delivery. Then she typed at the > bottom. However assuming that this is an isolated, relatively

mild > to moderate kyphosis, I would anticipate an ultimately good outcome, > although some type of surgical intervention will likely be needed.> Of course I went nuts after reading this and I called her right > away. She called me back that night and just told me she wasn't > hiding anything from me just thought of that after I left. That she > didn't see any problems with a hemi-v but ultrasound is never always > correct. I told her I wanted an amnio and I wanted to double check > that stomach bubble was present since it was at the other MFM's > office. She said that was fine and to call Monday morning to come > in. (Friday was when I spoke to her).> > Monday morning came and I went, checked for the stomach bubble and > it was there and normal size thank God. Had the fish and amnio done > as well and got an appointment for an MRI to check

on everything but > mainly on the spine of the baby. Well the MRi was about 45mins but > felt much longer. I got a call from my MFM the next day and told me > everything on the MRI looks normal and the spine is seen with the > scoliosis but they were not able to tell if there was a problem with > a hemi-V since shes still so small. Ugh. She told me that since she > didn't see anything wrong and they didn't either with that part then > most likely she has no hemi-v problems. I really think they aren't > seeing anything with the hemi-v but can't rule it out just in case. > That same day I received a call from her office telling me the FISH > results was normal. I am now waiting for the amnio results which I > have faith is normal as well. > > I have seen most of the photos on here of babies being helped with > the casting and it

gives me so much hope that this can be corrected. > I am however sadden that baths and trips to the pool will be a no > no. This is things we all take for granted. I am hoping casting is > all she will need to be corrected. I am hoping this does not > progress. I did think about terminating if something else was found > but since everything else is normal we can deal with this. We love > her very much and will do everything to seek treatment for her. > Anyone's baby was born with scoliosis? Was it very noticeable? I > don't want my daughter being born and then a ton of nurses and > doctors look at her as if she was a study monkey.> > Sorry longer then what I thought it would be. I wait on your reply's.> > > > > > > > > > > > > > > > >

____________ _________ _________ _________ _________ __>

[Guest guest]

Hi ,

We also live in South Florida and travel to SC for casting with Dr.

Stasikelis. I will hope for the best for you and your family, but if

you ever need information on Shriner's in Greenville, feel free to

email me.

Rita

> >

> > From: sweettartmommy <sweettartmommy@>

> > Subject: My Unborn baby has Scoliosis

> > To: infantile_scoliosis

> > Date: Saturday, October 18, 2008, 4:41 PM

> >

> >

> >

> >

> >

> >

> > Hello all my name is , married to a wonderful man and

> > together we have 2 kids. My daughter is 4 and my son is 3 they

are

> > the joy of our life. I will try and make this short. At my 18

week

> > ultrasound we found out we are having a girl and at my 20 week

> > ultrasound my OB told me the ultrasound showed a spec in the

heart

> > which is very normal and common in healthy babies and to not

worry

> > but she wanted to get it checked on. Then she went to tell me

the

> > tech wrote she wasn't able to see the spine too well. I saw the

> > spine and it looked fine to me but I remember asking her to make

> > sure there was no spina bifida. Reason I asked that I always

have

> > because a good old friend of mine was born with it. Well at 21

> weeks

> > I had a level 2 ultrasound with a MFM doctor. No spec was seen

but

> > baby's spine looked a little different I thought it was just the

> way

> > she was laying. Well the tech called the MFM doctor and he

looked

> > and looked and told me the worse news I have ever heard. My

> daughter

> > has kyphoscoliosis and I asked what it was he said a curve on

the

> > spine. I asked will she be able to walk he said most likely yes

> but

> > that's not the point. He told me she was going to walk with her

> hip

> > to one side and her neck to the other. Made her look like she

was

> > going to be a freak. I just started crying. He asked the tech to

> > look at everything else in front of him. Kidneys, heart, brain,

> > lips, limbs... etc.. He told me other then this she has no other

> > problems. If you want to terminate you and your husband can seek

> > consulting before and after. I wanted to die! I researched so

much

> > after that. I saw him on a Thursday and then Monday I went in to

> see

> > my ob and told her I wanted a 2nd opinion. The next day I saw

> > another MFM. First the ultrasound was done by a tech at first

the

> > spine looked normal and my husband even said the same. I knew

she

> > had the curve since I had saw it before. The tech said the spine

> > looks normal but she kept twisting and looking around and then

we

> > saw the curve. She has never seen scoliosis on ultrasound

before.

> > She told me it looks different and that the doctor will come in

> and

> > take a look. The Dr asked her to do a 3d/4d of the baby we were

> able

> > to see everything so much clearer. Everything on her spine is

> align.

> > The Dr came in and she looked herself very carefully told me the

> > curve is appearing on L1 & L2 and maybe T12 but wasn't sure. All

> the

> > vertebraes are on her spine. I even asked her to check the ribs

> > because of everything I have read. She has all her ribs and they

> are

> > align as well.

> >

> > She then told me about the spec again on the heart and how she

> said

> > its a soft marker for down syndrome and asked me if I wanted to

> get

> > an amnio test and I rejected because of risks of going into pre-

> term

> > labor and or miscarriage. She told me the curve looks mild to

> > moderate and that it can or might not get worse.

> > I saw a cardiac for an echo of the baby's heart (BTW we have

named

> > her t).. we saw 2 specs there instead of 1 but he assured

me

> > that doesn't mean its a higher marker for down syndrome and that

> it

> > almost always goes away before birth, its just like a birth

mark.

> > Her heart is normal thank God.

> >

> > I then talked to many other parents who told me they got an

amnio

> > done after finding out about the scoliosis so my husband and I

> > talked about it an thought it would be best to have one less

worry

> > in our mind. I also read my medical report on the last

ultrasound

> > that the Dr suspected Vater because of a suggestion of a

> > hemivertebrae on L2 the point of greatest angulation. Also said

> > since the " stomach bubble " wasn't seen she was thinking the baby

> > might have TE fistual with is associated with Vater. She also

> added

> > there may be an occult spinal dysaphism that is not apparent yet

> and

> > may not be detected until after delivery. Then she typed at the

> > bottom. However assuming that this is an isolated, relatively

mild

> > to moderate kyphosis, I would anticipate an ultimately good

> outcome,

> > although some type of surgical intervention will likely be

needed.

> > Of course I went nuts after reading this and I called her right

> > away. She called me back that night and just told me she wasn't

> > hiding anything from me just thought of that after I left. That

> she

> > didn't see any problems with a hemi-v but ultrasound is never

> always

> > correct. I told her I wanted an amnio and I wanted to double

check

> > that stomach bubble was present since it was at the other MFM's

> > office. She said that was fine and to call Monday morning to

come

> > in. (Friday was when I spoke to her).

> >

> > Monday morning came and I went, checked for the stomach bubble

and

> > it was there and normal size thank God. Had the fish and amnio

> done

> > as well and got an appointment for an MRI to check on everything

> but

> > mainly on the spine of the baby. Well the MRi was about 45mins

but

> > felt much longer. I got a call from my MFM the next day and told

> me

> > everything on the MRI looks normal and the spine is seen with

the

> > scoliosis but they were not able to tell if there was a problem

> with

> > a hemi-V since shes still so small. Ugh. She told me that since

> she

> > didn't see anything wrong and they didn't either with that part

> then

> > most likely she has no hemi-v problems. I really think they

aren't

> > seeing anything with the hemi-v but can't rule it out just in

> case.

> > That same day I received a call from her office telling me the

> FISH

> > results was normal. I am now waiting for the amnio results which

I

> > have faith is normal as well.

> >

> > I have seen most of the photos on here of babies being helped

with

> > the casting and it gives me so much hope that this can be

> corrected.

> > I am however sadden that baths and trips to the pool will be a

no

> > no. This is things we all take for granted. I am hoping casting

is

> > all she will need to be corrected. I am hoping this does not

> > progress. I did think about terminating if something else was

> found

> > but since everything else is normal we can deal with this. We

love

> > her very much and will do everything to seek treatment for her.

> > Anyone's baby was born with scoliosis? Was it very noticeable? I

> > don't want my daughter being born and then a ton of nurses and

> > doctors look at her as if she was a study monkey.

> >

> > Sorry longer then what I thought it would be. I wait on your

> reply's.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi ,

We also live in South Florida and travel to SC for casting with Dr.

Stasikelis. I will hope for the best for you and your family, but if

you ever need information on Shriner's in Greenville, feel free to

email me.

Rita

> >

> > From: sweettartmommy <sweettartmommy@>

> > Subject: My Unborn baby has Scoliosis

> > To: infantile_scoliosis

> > Date: Saturday, October 18, 2008, 4:41 PM

> >

> >

> >

> >

> >

> >

> > Hello all my name is , married to a wonderful man and

> > together we have 2 kids. My daughter is 4 and my son is 3 they

are

> > the joy of our life. I will try and make this short. At my 18

week

> > ultrasound we found out we are having a girl and at my 20 week

> > ultrasound my OB told me the ultrasound showed a spec in the

heart

> > which is very normal and common in healthy babies and to not

worry

> > but she wanted to get it checked on. Then she went to tell me

the

> > tech wrote she wasn't able to see the spine too well. I saw the

> > spine and it looked fine to me but I remember asking her to make

> > sure there was no spina bifida. Reason I asked that I always

have

> > because a good old friend of mine was born with it. Well at 21

> weeks

> > I had a level 2 ultrasound with a MFM doctor. No spec was seen

but

> > baby's spine looked a little different I thought it was just the

> way

> > she was laying. Well the tech called the MFM doctor and he

looked

> > and looked and told me the worse news I have ever heard. My

> daughter

> > has kyphoscoliosis and I asked what it was he said a curve on

the

> > spine. I asked will she be able to walk he said most likely yes

> but

> > that's not the point. He told me she was going to walk with her

> hip

> > to one side and her neck to the other. Made her look like she

was

> > going to be a freak. I just started crying. He asked the tech to

> > look at everything else in front of him. Kidneys, heart, brain,

> > lips, limbs... etc.. He told me other then this she has no other

> > problems. If you want to terminate you and your husband can seek

> > consulting before and after. I wanted to die! I researched so

much

> > after that. I saw him on a Thursday and then Monday I went in to

> see

> > my ob and told her I wanted a 2nd opinion. The next day I saw

> > another MFM. First the ultrasound was done by a tech at first

the

> > spine looked normal and my husband even said the same. I knew

she

> > had the curve since I had saw it before. The tech said the spine

> > looks normal but she kept twisting and looking around and then

we

> > saw the curve. She has never seen scoliosis on ultrasound

before.

> > She told me it looks different and that the doctor will come in

> and

> > take a look. The Dr asked her to do a 3d/4d of the baby we were

> able

> > to see everything so much clearer. Everything on her spine is

> align.

> > The Dr came in and she looked herself very carefully told me the

> > curve is appearing on L1 & L2 and maybe T12 but wasn't sure. All

> the

> > vertebraes are on her spine. I even asked her to check the ribs

> > because of everything I have read. She has all her ribs and they

> are

> > align as well.

> >

> > She then told me about the spec again on the heart and how she

> said

> > its a soft marker for down syndrome and asked me if I wanted to

> get

> > an amnio test and I rejected because of risks of going into pre-

> term

> > labor and or miscarriage. She told me the curve looks mild to

> > moderate and that it can or might not get worse.

> > I saw a cardiac for an echo of the baby's heart (BTW we have

named

> > her t).. we saw 2 specs there instead of 1 but he assured

me

> > that doesn't mean its a higher marker for down syndrome and that

> it

> > almost always goes away before birth, its just like a birth

mark.

> > Her heart is normal thank God.

> >

> > I then talked to many other parents who told me they got an

amnio

> > done after finding out about the scoliosis so my husband and I

> > talked about it an thought it would be best to have one less

worry

> > in our mind. I also read my medical report on the last

ultrasound

> > that the Dr suspected Vater because of a suggestion of a

> > hemivertebrae on L2 the point of greatest angulation. Also said

> > since the " stomach bubble " wasn't seen she was thinking the baby

> > might have TE fistual with is associated with Vater. She also

> added

> > there may be an occult spinal dysaphism that is not apparent yet

> and

> > may not be detected until after delivery. Then she typed at the

> > bottom. However assuming that this is an isolated, relatively

mild

> > to moderate kyphosis, I would anticipate an ultimately good

> outcome,

> > although some type of surgical intervention will likely be

needed.

> > Of course I went nuts after reading this and I called her right

> > away. She called me back that night and just told me she wasn't

> > hiding anything from me just thought of that after I left. That

> she

> > didn't see any problems with a hemi-v but ultrasound is never

> always

> > correct. I told her I wanted an amnio and I wanted to double

check

> > that stomach bubble was present since it was at the other MFM's

> > office. She said that was fine and to call Monday morning to

come

> > in. (Friday was when I spoke to her).

> >

> > Monday morning came and I went, checked for the stomach bubble

and

> > it was there and normal size thank God. Had the fish and amnio

> done

> > as well and got an appointment for an MRI to check on everything

> but

> > mainly on the spine of the baby. Well the MRi was about 45mins

but

> > felt much longer. I got a call from my MFM the next day and told

> me

> > everything on the MRI looks normal and the spine is seen with

the

> > scoliosis but they were not able to tell if there was a problem

> with

> > a hemi-V since shes still so small. Ugh. She told me that since

> she

> > didn't see anything wrong and they didn't either with that part

> then

> > most likely she has no hemi-v problems. I really think they

aren't

> > seeing anything with the hemi-v but can't rule it out just in

> case.

> > That same day I received a call from her office telling me the

> FISH

> > results was normal. I am now waiting for the amnio results which

I

> > have faith is normal as well.

> >

> > I have seen most of the photos on here of babies being helped

with

> > the casting and it gives me so much hope that this can be

> corrected.

> > I am however sadden that baths and trips to the pool will be a

no

> > no. This is things we all take for granted. I am hoping casting

is

> > all she will need to be corrected. I am hoping this does not

> > progress. I did think about terminating if something else was

> found

> > but since everything else is normal we can deal with this. We

love

> > her very much and will do everything to seek treatment for her.

> > Anyone's baby was born with scoliosis? Was it very noticeable? I

> > don't want my daughter being born and then a ton of nurses and

> > doctors look at her as if she was a study monkey.

> >

> > Sorry longer then what I thought it would be. I wait on your

> reply's.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi ,

I don't think the doctor is Mehta trainer either in Tampa I was told

SC is tho. I want to go to SC since its the closest to me.

>

> We live in Florida as well, but we flew to Chicago for Dylan's

risser casting.  I think Tampa is beginning to do some casting now

in certain cases, but when I first called them I was told it was

something they didn't do and I don't think the doctor there is Mehta

trained.  I am glad we flew to Chicago for the casting, but now that

Dylan is in a brace we are going to the Tampa Shriners. And in case

you are wondering why we chose Chicago over SC, it was because we

have family in Chicago, so there was no hotel expense, etc.  We

figured the plane ticket cost as much as we would spend on gas

driving to SC.

>  

>

>

>

>

> Re: Re: My Unborn baby has Scoliosis

>

>

> ,

>

> I'm happy to hear they have scanned and re-scanned her so you can

see as much as possible.  Sounds like you are doing well, and in good

hands.

>

> Actually, there is a Shriners hospital in Tampa.  Closer than SC. 

You may want to see if they have experience treating infants, but my

guess is NOPE.

>

> Good luck.

> Carmell

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18,

GERD, and Braydon 13, VACTERL-congenital scoliosis (fusion surgery

5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency

Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC

(released 4/99 & 12/06), anal stenosis, chronic constipation,

horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97),

neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes

(repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

discrepancy- wears 3cm lift, valgus deformity, GERD, Gastroparesis,

SUA, etc. http://carmellb- ivil.tripod. com/myfamily/

>

> Congenital scoliosis support group

> http://health. groups.yahoo. com/group/ CongenitalScolio sisSupport/

>

[Guest guest]

Hey ,

I can really relate to what you said about taking your other kids'

good health for granted. At the time of 's diagnosis, I had

been a parent for over a decade and I just figured all would go

according to plan. That is one good thing that comes of all this -

we really learn to appreciate our blessings and not sweat the small

stuff. You will also meet some wonderful folks. We will all walk

you through this journey that we, ourselves, have taken before.

By the way, Carmell gave you some great advice about considering an

evaluation at Shriners in Philadelphia when the time comes. Their

staff is top-notch and there is practically no treatment option that

they do not offer - they have a great doctor who does serial casting -

he is Mehta trained, has the proper frame, etc.

Best of luck to you and please keep us posted - you WILL get through

this!!

Hugs,

> > > >

> > > > From: sweettartmommy <sweettartmommy@>

> > > > Subject: My Unborn baby has Scoliosis

> > > > To: infantile_scoliosis

> > > > Date: Saturday, October 18, 2008, 11:41 AM

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Hello all my name is , married to a wonderful man and

> > > > together we have 2 kids. My daughter is 4 and my son is 3

they

> > are

> > > > the joy of our life. I will try and make this short. At my 18

> > week

> > > > ultrasound we found out we are having a girl and at my 20

week

> > > > ultrasound my OB told me the ultrasound showed a spec in the

> > heart

> > > > which is very normal and common in healthy babies and to not

> > worry

> > > > but she wanted to get it checked on. Then she went to tell me

> the

> > > > tech wrote she wasn't able to see the spine too well. I saw

> the

> > > > spine and it looked fine to me but I remember asking her to

> make

> > > > sure there was no spina bifida. Reason I asked that I always

> have

> > > > because a good old friend of mine was born with it. Well at

21

> > > weeks

> > > > I had a level 2 ultrasound with a MFM doctor. No spec was

seen

> > but

> > > > baby's spine looked a little different I thought it was just

> the

> > > way

> > > > she was laying. Well the tech called the MFM doctor and he

> looked

> > > > and looked and told me the worse news I have ever heard. My

> > > daughter

> > > > has kyphoscoliosis and I asked what it was he said a curve on

> the

> > > > spine. I asked will she be able to walk he said most likely

> yes

> > > but

> > > > that's not the point. He told me she was going to walk with

> her

> > > hip

> > > > to one side and her neck to the other. Made her look like she

> was

> > > > going to be a freak. I just started crying. He asked the tech

> to

> > > > look at everything else in front of him. Kidneys, heart,

> brain,

> > > > lips, limbs... etc.. He told me other then this she has no

> other

> > > > problems. If you want to terminate you and your husband can

> seek

> > > > consulting before and after. I wanted to die! I researched so

> > much

> > > > after that. I saw him on a Thursday and then Monday I went in

> to

> > > see

> > > > my ob and told her I wanted a 2nd opinion. The next day I saw

> > > > another MFM. First the ultrasound was done by a tech at first

> the

> > > > spine looked normal and my husband even said the same. I knew

> she

> > > > had the curve since I had saw it before. The tech said the

> spine

> > > > looks normal but she kept twisting and looking around and

then

> we

> > > > saw the curve. She has never seen scoliosis on ultrasound

> before.

> > > > She told me it looks different and that the doctor will come

> in

> > > and

> > > > take a look. The Dr asked her to do a 3d/4d of the baby we

> were

> > > able

> > > > to see everything so much clearer. Everything on her spine is

> > > align.

> > > > The Dr came in and she looked herself very carefully told me

> the

> > > > curve is appearing on L1 & L2 and maybe T12 but wasn't sure.

> All

> > > the

> > > > vertebraes are on her spine. I even asked her to check the

> ribs

> > > > because of everything I have read. She has all her ribs and

> they

> > > are

> > > > align as well.

> > > >

> > > > She then told me about the spec again on the heart and how

she

> > > said

> > > > its a soft marker for down syndrome and asked me if I wanted

> to

> > > get

> > > > an amnio test and I rejected because of risks of going into

> pre-

> > > term

> > > > labor and or miscarriage. She told me the curve looks mild to

> > > > moderate and that it can or might not get worse.

> > > > I saw a cardiac for an echo of the baby's heart (BTW we have

> > named

> > > > her t).. we saw 2 specs there instead of 1 but he

assured

> me

> > > > that doesn't mean its a higher marker for down syndrome and

> that

> > > it

> > > > almost always goes away before birth, its just like a birth

> mark.

> > > > Her heart is normal thank God.

> > > >

> > > > I then talked to many other parents who told me they got an

> amnio

> > > > done after finding out about the scoliosis so my husband and

I

> > > > talked about it an thought it would be best to have one less

> > worry

> > > > in our mind. I also read my medical report on the last

> ultrasound

> > > > that the Dr suspected Vater because of a suggestion of a

> > > > hemivertebrae on L2 the point of greatest angulation. Also

> said

> > > > since the " stomach bubble " wasn't seen she was thinking the

> baby

> > > > might have TE fistual with is associated with Vater. She also

> > > added

> > > > there may be an occult spinal dysaphism that is not apparent

> yet

> > > and

> > > > may not be detected until after delivery. Then she typed at

> the

> > > > bottom. However assuming that this is an isolated, relatively

> > mild

> > > > to moderate kyphosis, I would anticipate an ultimately good

> > > outcome,

> > > > although some type of surgical intervention will likely be

> needed.

> > > > Of course I went nuts after reading this and I called her

> right

> > > > away. She called me back that night and just told me she

> wasn't

> > > > hiding anything from me just thought of that after I left.

> That

> > > she

> > > > didn't see any problems with a hemi-v but ultrasound is never

> > > always

> > > > correct. I told her I wanted an amnio and I wanted to double

> > check

> > > > that stomach bubble was present since it was at the other

> MFM's

> > > > office. She said that was fine and to call Monday morning to

> come

> > > > in. (Friday was when I spoke to her).

> > > >

> > > > Monday morning came and I went, checked for the stomach

bubble

> > and

> > > > it was there and normal size thank God. Had the fish and

amnio

> > > done

> > > > as well and got an appointment for an MRI to check on

> everything

> > > but

> > > > mainly on the spine of the baby. Well the MRi was about

45mins

> > but

> > > > felt much longer. I got a call from my MFM the next day and

> told

> > > me

> > > > everything on the MRI looks normal and the spine is seen with

> the

> > > > scoliosis but they were not able to tell if there was a

> problem

> > > with

> > > > a hemi-V since shes still so small. Ugh. She told me that

> since

> > > she

> > > > didn't see anything wrong and they didn't either with that

> part

> > > then

> > > > most likely she has no hemi-v problems. I really think they

> > aren't

> > > > seeing anything with the hemi-v but can't rule it out just in

> > > case.

> > > > That same day I received a call from her office telling me

the

> > > FISH

> > > > results was normal. I am now waiting for the amnio results

> which

> > I

> > > > have faith is normal as well.

> > > >

> > > > I have seen most of the photos on here of babies being helped

> > with

> > > > the casting and it gives me so much hope that this can be

> > > corrected.

> > > > I am however sadden that baths and trips to the pool will be

a

> no

> > > > no. This is things we all take for granted. I am hoping

> casting

> > is

> > > > all she will need to be corrected. I am hoping this does not

> > > > progress. I did think about terminating if something else was

> > > found

> > > > but since everything else is normal we can deal with this. We

> > love

> > > > her very much and will do everything to seek treatment for

> her.

> > > > Anyone's baby was born with scoliosis? Was it very

noticeable?

> I

> > > > don't want my daughter being born and then a ton of nurses

and

> > > > doctors look at her as if she was a study monkey.

> > > >

> > > > Sorry longer then what I thought it would be. I wait on your

> > > reply's.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > __________________________________________________

> > > >