Hello, i am new here, mom of baby girl with congenital kyphoscoliosis

[Guest guest]

Good Evening everybody,

i am a new member here, i was lucky to find this group through Mrs. the

founder of the infantilescoliosis.org website. She was very kind introducing me

to this group since i am in desperate need for information and for talking to

parents like myself.

ok so where do i start...

I am a mom of 2 children, a 4.5 years old wonderful little boy, and a precious

little baby girl who is 6 months old. we live in Sudan, Africa.

i dont know if i am allowed to talk as much as i want here, and i promise that

next times i write here i will keep it specified and short, but please allow me

to vent this time because for the last 6 months i had nobody to talk to and no

support whatsoever from anybody except the huge light of faith in God that i

felt in my heart which kept me going on ...

actually the first person who gave me hope and some information about this

matter was mrs. 3 days ago, but before that i was just like a lost thing

in a big sea...

my baby girl was born as a premature baby at gestational age of 33 weeks, the

pregnancy was a very critical one because i was supposed to have twins but the

other baby was miscarried at 6 weeks, my obgyn told me not to hope for the

second baby to live but with God's will my little angel came out to life against

all odds and she lightened up my life since the first minute i saw her in the

neonatal unit.

My whole world seemed to be falling apart when the doctor at the neonatal unit

told me that she is " deformed " ! that was the exact word he used... i kept asking

him what do you mean by deformed and what's the problem of my baby? but he didnt

answer any of my questions he just kept telling me: it is too early for us to

determine anything, you will just have to wait and see...

after that when i went to see her in the neonatal room the first thing i saw was

her club foot, i have to admit that i knew nothing about it and i thought that

it would stay this way forever, the nurse there saw me crying and was generous

enough to share some of the " top secret " information about my baby which they

were keeping from me!!

i could not understand how come you cant tell me the nature of my baby's

problems when it is my own baby and how can you have the heart to just leave me

crying beside my baby's crib not knowing what the doctor meant by saying that

" deformed " word... anyway so the nurse told me she had a problem at her back

bone. that her back bone was curved. that was all she said. i was horrified

again because i had no clue what that meant, the doctor then came and after

asking him for like 100 times he finally told me that my child might be disabled

in the future and there is nothing we can do at the time being. through all the

tears and pain and agony i felt when hearing his words all he had to say was: so

what if your child becomes disabled? pull yourself together!

please don't misunderstand me , i have nothing against disabled kids and on the

contrary i believe they are angels and blessed in all possible ways. it is just

the lack of information, the vague dark future that the doctors made me imagine

for my child, that is the thing that was killing me most...

my baby stayed at neonatal care unit for 11 days, i used to go to feed her and

then go back home, during these days i asked one of the nurses to show me my

baby's file which she refused at first but then i said i have every right to see

it, she showed it to me and i saw the xrays of my baby and took pictures of them

with my phone camera. later at home i opened 100s of pages on google searching

for spine problems pictures and xrays and comparing them to my baby's xrays

until i found a similar one which said hemivertibrae and scoliosis... i had to

search for nights and nights over the internet yet all the information i found

was unclear and scary since i still didnt know exactly the nature of the

problem...

Oh my God how long those days and nights were... i used to cry all night,, i

felt so lonely and sad... everybody around me was totally against me ...one of

the relatives blamed me for my baby's problems, she said that it is all because

of all of those Pepsi cans i used to drink while pregnant!!! so drinking pepsi

causes birth defects? how ridiculous is that!

not to mention that my mother-in-law accused me of " fighting destiny " only

because i refused to surrender to my baby's first doctor's opinion and i kept

taking my baby to many doctors that are available here... she was so mean to me

and she used to make fun of me every time i go for doctor consultation, she

would bring up all kinds of stories about babies that were born with problems

who just didn't make it and ended up dieing or lived as disabled kids and their

parents just took it the way it is without running around like i do... i refused

to believe her and i refused to just leave my baby girl waiting for her problems

to become worse.. i believe my duty as a mom is to do everything i can to make

my baby's life as good and healthy as it can possibly be and i will keep doing

it until the last minute of my life... I felt like i was fighting ghosts

because nothing was clear and nobody would explain anything to me... in the

first 1 month after my baby's birth nobody would visit us at home from

relatives, i felt as if my baby was alienated and her birth was not celebrated

as it should have been! just because she had some bone trouble? how cruel can

that be... how cruel can people be sometimes... but i refuse to let them bring

me or my baby down,,, and with God's help and with his great will, she will grow

up to be a beautiful healthy girl and she will be a wonderful successful young

lady in-spite of all of them...

so after 2 months after her birth and after searching and searching i could

finally locate 1 doctor who was pediatric orthopedic, i dont know if its true

but they say he is the only one of that specialty here in sudan, you can find

lots of orthopedicians but he is the only one who is specialized for children,

when we visited him he started immediately her club foot treatment by the

bonseti casting method, but he said that as for her scoliosis we would just have

to wait and see what happens when she is a little bit older say 6 to 8 months

old. he said he was not specialized in spinal problems but that he could treat

her club foot. we went for the last 4 months every week to change the cast for

my baby's foot, its better now but still not 100% in normal shape it is still

curved inside.

anyways before 10 days or so i found a foreigner orthopedician who comes here 3

days every month to treat difficult cases, we went to see him and it was him who

told me that my baby has exactly: multiple hemivertibrae, kyphoscoliosis, 1

missing rib and fused ribs.. he told me that the treatment is that we should go

abroad to make braces for my baby's back and that we would change the brace

every year until she is 18 years old and then maybe he will perform the fusion

surgery... he didnt specify the name of the bracing method but did say something

that its made of a ceramic like material? i am not sure.. since we've visited

him i've been searching and searching over the net because i still feel what he

said is too easy to be true, because the bracing would maybe prevent the curve

from worsening but what about the hemivertibrae.. and while searching over the

net i ran into infantilescoliosis.org and i sent a message to which Mrs.

very kindly responded.

I've been told that there is another group here about congenital scoliosis and

the moderator's name is Carmel i think, can anybody please give me the address

of this group as well? because as i read and heard that treatment differs from

congenital to infantile...

and now i am just praying and hoping for the best for my baby... i think that

this is the first step in the right direction, please forgive me for talking too

much.,. believe me i am not a nagging nor talk-a-lot person but i just needed to

speak to somebody ... thank you so much for reading and thank you so much for

helping and for accepting me and my baby among you.

best regards

maisa