New Mum in 11 weeks to SB little girl!

[Jess Mason]

Hi Everyone,

My name is Jess Mason and I am 24 and my husband (Joel, 27) and I are expecting our first little girl. We live in Bunbury in Western Australia. Nice and close to the beach. I work in mining as does my husband. We have had lots of scans of our little girl and MRI etc and she has been diagnosed with SB in the lower region of her back. She also has a Arnold Chiari Malformation. We dont have a treatment plan yet and are unsure what happens from here other than I will be induced in 11 weeks time and she will be taken to a children's hospital in Perth for an operation. We can stay at this hospital with her for the two weeks she is expected to stay there for.

Have gone up and down with emotions but the final one I have now is joy that I am going to be able to see my little girl in 11 weeks. We were told she wouldnt make it so I am only looking at the positive things like how much I want this little girl no matter what. Seems our lives are about to be turned upside down by operations and hospitals but thank God they are prepared for this and she will be safe. I can only hope that we are strong enough for this but am sure we are otherwise we wouldnt be sent a special child.

I have enjoyed reading all the positive posts. You all seem to understand everything! My family have been wonderful but they all continue to live their own lives while this is my every waking thought.

Well enough rambling, I look forward to talking to you all.

[dahliafaolan]

Hi Jess! My name is Ashley but every one just calls me Dahli. I'm 23 and I have lipomyelomeningocele (which is just a fancy way of saying that my lesion formed a little mass at the base of my spine and that there were fatty "tumors" on my spinal cord). I also have scoliosis and a neurogenic bladder. But more importantly, I am the proud owner of a bachelor's degree and I am currently working toward my CPA licensing while working as a tax preparer. I am also very madly in love with my boyfriend of 2 years.

[Jess Mason]

Hi Dahli
I have been reading some of your posts - looks like I have lots to learn from you all. Thanks for saying hi.

[Dodger67]

CPA Licensing?

[Gymp]

CPA,is a certified public accountant,I think...

Hi Jess and Joel,I'd like to welcome you to the forum as well,I'm Gymp,born in 1956 and have SB as well.Oh Yeah, to live close to the beach....Darn,it's winter here but spring's just around the corner. :-)

Gymp

[abbysmum]

Welcome Jess - I too will be mama to a little girl with SB in about 11 weeks :). No induction planned, and currently we're hoping for a vaginal birth but various factors may influence that and enforce a c/s afterall.

I'm in Ireland but one of my best friends is from Perth :).

Enjoy the rest of your pregnancy & I look forward to walking this particular road with you.

[dahliafaolan]

Yep, you're right, Gymp. I'm going to be a certified public accountant when I grow up. lol

[Gymp]

:-) being a grownup is no fun,stay young at heart for as long as you can....

Gymp

[lrllnd1]

Hi Jess, I am also having a girl in around 5 weeks. Her lession is around L3 to L4 and also appears to have the Chiari Malformation, which they tell me is quite common in cases of myelomeningocele. I found out back in November and the first two weeks after were the hardest two weeks of my life. I also have a healthy two and a half year old boy that always cheers me up when I am down and a very supportive husband. I feel a lot better now that I have done a lot of research and been in touch with the Spina Bifida association in my area. I also got to talk to the pediatric neurosurgeon, and the nurse that manages the Spina bifida clinic where my baby will be born, which was great. I live in Canada by the way. I strongly recommend trying to get a appointment with a pediatric neurosurgeon, I wish I had of months ago. I am actually going to have a scheduled c section at around 39 weeks since the hospital I have to go to is in another province a 6 hour drive away.
Hope your pregnancy is going well. Don't try to blame yourself I did that for a while but the doctor told me there was nothing I could do, I took folic acid 7 months before I got pregnant and all through the pregnancy, it just happens.

[dsmith]

Please look into banking the baby's cord blood. I banked my daughters blood and we did not even know that she had SB. We are very happy that we took the precaution and hope that the stem cells from the cord blood will help to increase her function in the future.

I don't know what is available in Australia, but please check it out.

[valerie]

Hi, i had a cian 10months ago, his spina bifida wasnt diagnosed till birth. it was a complete shock, he has myleomening. L1/L2, he doesnt have any movement from the waist down unfortunately. every case is different so i have been told but am learning that also along the way but he is the happiest & lovable baby you could ever meet so hang in there xxx

[JessMason]

Wow, I just re read this, I posted it when I had just found out about my little girl who now is really the light of my life- Ella Charlotte had been diagnosed with SB.

Who would have though that I would be where I am now. Ella is the most beautiful little girl. As a baby she hardly cried, bravely endured operations and only wanted to be cuddled to a lovely little girl who is her Mummy's little shadow and proudest achievement.

I was so confused and scared then. I have now learnt more medical terminology and new skills like catheterisation and the most importantthing is I found what true love is, the minute that little girl was placed in my arms.

I wish I could go back to the me who was so scared and show her a picture of us now. Life may have its ups and downs and I would still do anything in my power to make Ella's life as easy as possible but i am a firm believer that this will make her stronger and more empathetic, more caring and more brave than I could ever hope for.

Life is here for living and she will have every chance to live it however she wants to, with my love and support backing her all the way.

God bless you and stay with you as you step life a little differently than the 'normal' path but oh what a rewarding one.

Jess Mason.

[tamcginnis]

Our baby too was just diagnosed just over a week ago-we are 20 weeks. It's scary, but from what I read here it seems like pregnancy is the scariest part-just wait and see... I am going to to be referred to neurosurgeon soon and I think this will make me feel so much better and be able to plan things more appropriately. I wish you luck with everything and welcome!

Amanda