My Unborn baby has Scoliosis

[Guest guest]

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 susie9855]

Hello. Thank you for this post. I am wondering if you can tell us what happened after birth. My sister is 20 weeks pregnant and dealing with very similar situation. Would you be open to talking more about your experience via email? thank you so much!