Re: My Unborn baby has Scoliosis

October 18, 2008

,

Welcome to this group. You and your husband have been through alot in a short period of time. I was trying to take it all in. You have done well in getting as much information as possible. I do believe as you said, that they won't be able to tell for sure until t is born (love the name by the way!). Be sure you are keeping yourself healthy and rested.

Scoliosis is very treatable. I can't believe they asked you if you wanted to terminate! Read the stories on the website (www.infantilescoliosis.org) for inspiration. God has given you a precious girl, and He will give you the strength to care for any needs she might have. Our daughter Moriah was born with scoliosis ( 2 hemis) and tetrology of fallot (four things wrong with her heart). She will be twelve in 2 weeks!! God is faithful.

There are many wonderful parents on this group willing to share their experiences. Again, welcome.

shellie grant

Subject: My Unborn baby has ScoliosisTo: 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.__________________________________________________

October 18, 2008

Hi Shellie,

Thank you for the warm welcome. I saw your daughters pictures she is

beautiful. I have read the stories on infantilescoliosis.org and its

what has helped me sleep at night to be honest with you. Moriah you

said was born with scoliosis did you know this before she was born?

Was it obvious when she was born? I had read about her on the site

and its amazing everything shes been thru, God bless her.

>

> 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.

>

> __________________________________________________

>

October 19, 2008

Hi ,

I read a lot here but don't post very often. However, your story

really touched my heart. What a lot for you and your husband to go

through already and you haven't even been able to hold your baby yet!

I, too, can't believe they asked you if you wanted to terminate!

Scoliosis is VERY treatable.

Just to give you one example, we noticed something wrong with the

shape of my son's spine shortly after his first birthday. The

pediatrician thought it was just muscle asymmetry at first but then

it got noticeably worse. By the age of two he was braced full-time.

(Back then, in 2000, I didn't even know about casting). Luckily the

brace held his curve and then in 2004 he had vertebral body stapling

(VBS), a surgical procedure that would offer some correction of his

cure and allow him to be free of his brace. So, yes, he did have

surgery, and while it was less invasive than some other spinal

surgeries, it was still scary - but it has helped him have a more

normal, happy childhood.

But my point is that if you saw my son today he is a normal, happy,

healthy, active nine year old. However, back when he was first

diagnosed I did not know what the future held for him and I was

terrified.

The treatment of scoliosis in infants has come a long way and there

are some excellent doctors specializing in that exact condition.

When the time comes, I'm sure you can get some very good

recommendations here and your daughter can be casted very early if

need be.

In the meantime, hang in there and my best wishes to you and your

family!

> >

> > 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.

> >

> > __________________________________________________

> >

October 19, 2008

My heart goes out to your family. I know this must be a frightening and stressful thing to go through. I was a little suprised too that the doctor asked about terminating the pregnancy because of scoliosis. Maybe he was concerned there might be a more serious underlying genetic disorder associated with it. But it sounds like so far everything else is looking good. As the other members on this group have already said, there are lots of treatment options available for infantile scoliosis now and it sounds like you are doing your research in advance. My son, Dylan, was diagnosed when he was about 8 months old. Prior to the diagnosis of scoliosis, he was diagnosed with torticollis (a tight neck muscle) and plagiocephaly (a flat spot

on one side of his head). He wore a helmet for the plagiocephaly which rounded out his head and he received physical therapy for the torticollis which is now resolved. His curve was 31 degrees prior to casting and after 8 months of casting (3 casts), his curve is under 5 degrees. He was done with the casting in June and is currently wearing a TSLO brace. The last x-ray showed that he was still holding in the brace. We go back in December for another x-ray and if that x-ray looks good, we will most likely take the brace off and see how he does out of the brace.

My Unborn baby has Scoliosis

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.__________________________________________________

October 19, 2008

Hi ,

It doesn't seem like enough to say sorry for what you've had to go through over

the past few weeks. Try not to let it take away from the excitement of your

pregnancy and adding to your family.

Replying it one of your questions, I am pretty positive my daughter Violet was

born with her scoliosis but we did not know ahead of time. Right away i noticed

when someone would hold the baby upright over the shoulder that something was

not right with her body. at our one month visit i asked the doctor and she

actually told me it was just her guts being dominate on one side of her body!

at our 2 month visit is when we were given an xray and the scoliosis was

confirmed, 31 degrees at T12. She is now five months old and there are times

when i think it's getting better because she is able to hold her body straight,

but the curve is very much still there and we are doubtful that it will be

resolving on it's own because of her RVAD number (23). Since t is not your

first baby i think you will be able to notice that she holds herself in a funny

way. If i had not had a child i don't think i would have though it was

abnormal.

the other thing is that Violet also had tortocollis and a flat spot on her head.

i really believe this is all connected to the curve so you should be prepared

for a few other smaller issues. the flatness of her head i because of it's

placement (not directly at the back of her head) is in line with how her body

curves. and the tightness in her neck was also a compensation for the way she

leans.

we have not started treatment yet for her back since she is so young but we go

to SLC in November for a consultation with the doctor and we'll decide at that

time when she will start with casting.

You will get through this. it may take a LONG time but it'll work out.

Janet

>

> Subject: My Unborn baby has Scoliosis

> To: infantile_scoliosis

> Date: Saturday, October 18, 2008, 9:41 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.

>

October 19, 2008

Hi ,

I am so sorry about the rollercoaster ride.... It does make a mother's heart ache. My Noelle was born with scoliosis presented at birth. The signs were a mild right-sided torticollois and a prominent rib bulge on her right side. Unfortunately, her pediatrician was not familiar with infantile scoli and told me the bulge was, at first, the way she laid in utero and then, that she was just developing assymmetrically. Noelle's scoli was finally diagnosed at 11 months and then we began the process of x-rays, ultrasounds and the MRI. We had to search for docs and finally found an excellent Mehta doc and this support group. She is 2 now and was finally casted at 18 months. She is in cast nuber 4 and is doing extremely well. It sounds as though your precious angel is perfectly healthy except for the scoli and please remember that about 90% of infantile scoli cases do resolve on their

own..... Your daughter's might as well! I will pray that is the case for you. In the meantime, you can get your ducks in a row, so to speak, and get in touch with one of these Mehta docs to evaluate her ASAP once she arrives. Start sending them all of the tests that have been done thus far so they are already familiar with your case. As with most cases of IS, early detection is the key and you can't get much earlier than this! Noelle did not look like a freak when she was born, so please don't worry about that. Noelle is beautiful and not just because I am her mother.... Everyone says so! LOL Also, with most clothing on, the cast is very difficult to detect and she moves around quite normally. Yes, the cast does get to be tedious and I do long for the day when she will be out of it, but her outcome is so positive. This method has hopefully helped us to avoid surgery and

cure her scoli. You are so ahead of the game I feel very optimistic that your daughter will have a very healthy, happy and normal life..... Please keep us posted and try to stay positive and enjoy this special time in your life.... Hugs, Steph

Subject: My Unborn baby has ScoliosisTo: 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.__________________________________________________

October 20, 2008

Hi ,

We did not know about her scoliosis or her heart prior to birth. We were totally surprised. God was very gracious though throughout the whole deal. We took lots of pictures back then which I hope to scan into digital format and make a slideshow of sorts. I don't want to forget anything. The memories don't hurt as much looking back as it did living right in the middle of all the struggles.

Enjoy the rest of your pregnancy and we will be praying for a safe and healthy delivery.

shellie

Subject: Re: My Unborn baby has ScoliosisTo: infantile_scoliosis Date: Saturday, October 18, 2008, 12:22 PM

Hi Shellie,Thank you for the warm welcome. I saw your daughters pictures she is beautiful. I have read the stories on infantilescoliosis. org and its what has helped me sleep at night to be honest with you. Moriah you said was born with scoliosis did you know this before she was born? Was it obvious when she was born? I had read about her on the site and its amazing everything shes been thru, God bless her. > > From: sweettartmommy <sweettartmommy@

....>> Subject: [infantile_scoliosi s] My Unborn baby has Scoliosis> To: infantile_scoliosis @yahoogroups. com> 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.> > > > > > > > > > > > > > > > > ____________ _________

_________ _________ _________ __>

October 21, 2008

Hi , Wow what a ride you have gone on in such a short period of time, I am impressed at how much they have found out about your little girl so early. Santi was detected with club feet and major limb contractures in utero, but the doc knew me too well to get me upset, that was the last thing I needed during my pregnancy, they knew I would not abort, and that there was nothing more they could do at that time. Take time right now to look only at the beautiful things happening inside you right now. You know that she is growing fine and has no deformations or life threatening problems, if the major concern in specifically scoliosis, you are doing fine.. You probably already know what the next steps are. Your daughter will not know any different when she is wearing a cast or a brace, the only one that will notice

will be you, at first it will upset you and you will be angry and most likely a lot of crying will come, but there are soo many of us that have gone through it, are going through it, and have had a tough ride also. Your daughter is going to be really really strong, I don´t know one child that has not had physical impairments that is not a strong character. Make her know that these minor setbacks do not affect her or who she is, she is still that beautiful girl that you are going to see, and once that fear is taken away from you, you will finally be able to sit back, breath and love that child more then anything in this world. I have to deal with major limb deformations in my child, thus the visual part of seeing my beautiful Santi in the beginning was the most difficult thing I ever had to deal with. We all expect and want to see the "perfect" child, well to me the word "perfect" is not defined completely, it entails so much

more. Now at 6 years old, Santi is the love of everyones life, Yes kids laugh at him at stare, but because his character attracks everyone, and pèople adore him, soon the children do not see him with his limitations, but only as Santi...

Your daughter is going to be a beautiful, strong, intelligent girl, that I can already garentee, and you and your husband are already going through the worse part, the investigation, the learning, the pain, once she is delivered you will amazed at how much better things will get...You sound like a very determined and intelligent mom, I know things seem impossible right now, but it really really does get better, I can promise that.. You have found a great group of super smart moms and dads that will help you along the way. If you ever need to talk or vent or just hear some comforting words, we are all hear for you and your beautiful daughter...

Take care and please do take time to enjoy these months,

Sincerely,

Kelli and Santiago

From: sweettartmommy <sweettartmommy@ yahoo.com>Subject: [infantile_scoliosi s] My Unborn baby has ScoliosisTo: infantile_scoliosis @yahoogroups. comDate: 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.____________ _________ _________ _________ _________ __

October 22, 2008

Hi ,

So glad to hear your son Dylan is doing so well. He's very lucky

boy. I love reading stories like yours it does give me a lot of hope

and shows me this isn't something terrible and it can be corrected.

It's just a bump on the road you need to cross. Let us know when his

brace comes off and how it works out for him out of it.

Thanks for replying.

>

> My heart goes out to your family. I know this must be a

frightening and stressful thing to go through. I was a little

suprised too that the doctor asked about terminating the pregnancy

because of scoliosis. Maybe he was concerned there might be a more

serious underlying genetic disorder associated with it. But it

sounds like so far everything else is looking good. As the other

members on this group have already said, there are lots of treatment

options available for infantile scoliosis now and it sounds like you

are doing your research in advance. My son, Dylan, was diagnosed

when he was about 8 months old. Prior to the diagnosis of

scoliosis, he was diagnosed with torticollis (a tight neck muscle)

and plagiocephaly (a flat spot on one side of his head). He wore a

helmet for the plagiocephaly which rounded out his head and he

received physical therapy for the torticollis which is now

resolved. His curve was 31 degrees prior to

> casting and after 8 months of casting (3 casts), his curve is

under 5 degrees. He was done with the casting in June and is

currently wearing a TSLO brace. The last x-ray showed that he was

still holding in the brace. We go back in December for another x-

ray and if that x-ray looks good, we will most likely take the brace

off and see how he does out of the brace.

>

> My Unborn baby has Scoliosis