22 weeks pregnant of a little girl w/ sb

[ZENIA]

Hi

i found out my little Jazminne has SB in my 18 week ultrasound,, i am still waiting to see the specialist i will see him next week may 12... not knowing whats going on is driving me craze... any confort words... im lost....
i just know that we will love our daughter no matter what.. i just want her to be ok

[ollieholmes]

Welcome to the forum. You will find plenty of nice freindly people here who will do their best to help and advise. Have a look around and feel free to comment on any threads.

[Barb]

Congrats on your little girl. Read, read and read here. You will find a lot of great personal stories of hope and love

[Dodger67]

Welcome to the forum!
:happy065:
Many of your questions have already been answered in this forum - even questions you havn't thought of yet. Feel free to post to any thread or to start new ones. Not only questions, you are also welcome to express your thoughts and feelings - even ranting and raging is welcome if you feel the need.

[cadon's mum]

welcome and congratulaions! My name is lorraine i have a little boy 13 weeks, with s/b & hydro. I know exactly how your feeling, and all i can say is STAY POSITIVE. I know that it's really hard when your being told lot's of scary things, the dr's have to give you the worst case scenario, every s/b child is different and i have learnt that most problems have a solution. There are lot's of people on this site willing to try & answer any of your questions.

[ZENIA]

thanks Lorraine... i am trying to stay positive but i brake down some times... the doctors could be hard sometimes but i guess is what you say they have to give me the worst case scenario.. well good luck with your baby...talk to you soon

[kellymumof4]

Hi i,mkelly mum of 4 ruby has S/B hydro and grace has S/B occulta. When i was pregnant with my twins they told me to have a termination even though casey was healthy. Drs can be so harsh but i told mine that there was no way i was ending 2 babys lives i would love them no matter what.
Think just best to take each day as it comes i was in your position this time last year its the not knowing thats the worst when your pregnant.

[TapMa]

Hey Zenia,

I'm in the same boat w/you. I go to get a more detailed ultrasound on Tuesday as well. My husband and I, are pregnant with twin girls and baby b has the chances of having osb. I'm 21 weeks, so I felt like you had an idea of what I'm feeling like. I hope everything goes well!

Tina

[ZENIA]

When the doctors told me they where refering to the baby as if i was automatically going to have an abortion... i looked at the doctor and told him that there is no way and that it will never cross my mind to terminate my pregnancy i will love my daughter no matter what.. he just asked me if i was sure of what i was saying... i am completely sure that i want and love my baby... I DONT KNOW HOW WE ARE GOING TO DO IT.. wedont have alot of money we have another child 5 years old to care of.. all i know is that one day at a time some how we will make it and for sure our baby will be loved....

[LisaJoy]

Have you met yet with a pediatric neurosurgeon, or chosen a hospital where your baby will have surgery? In addition to meeting with a neurosurgeon, you should go ahead and make an appointment with a medical social worker at the hospital. There are several state and federal programs that your child will like be eligible for; you can go ahead and start the paperwork now.

[ZENIA]

tomorrow i will see the specialist he is the one that will deliver the baby and all.. the baby will be born in miami jackson hospital they work with the university of miami and is supposed to be one of the best hospitals.her surgery will take place at the same hospital .. i been told i will meet the whole team of doctors that will be treating me while pregnant and then the baby when she is born.

[LisaJoy]

Hmmm, Zenia, you might want to ask a few more questions about that. There will absolutely be different doctors involved -- pediatric neurosurgeons don't deliver babies and obstetricians don't perform pediatric neurosurgery! But since the baby will have surgery at the same hospital where you give birth, hopefully there will be great communication and a seamless transition. It isn't always like that -- I've read many instances on this forum and elsewhere where the baby is transported after birth to a different hospital for surgery.

You definitely should ask about the availability of a medical social worker to help you apply for the various programs that the baby might be eligible for.

Good luck! We will be with you all the way. Keep us posted and ask whatever questions you want. There are many moms on this forum who've walked in your shoes.

[LaceyRae]

I know exactly how you feel. My fiance and I went to get our routine ultrasound and got the dreaded phone call the next day. My doctor couldn't tell us much, except something with his spine... so we had to wait a week until we could see the specialist and find out what was going on! One of the worst weeks of my life!! I was on the computer looking up stuff and spina bifida popped up immediatly...I knew that was what it was, and sure enough it is. I have cried so much in the past week since the for sure diagnosis, I can't anymore. We have a 17 month old that depends on me everyday and I have to stay positive for the family and this baby! How much worse would it be if you aren't positive for him?!? I just know that I was blessed with this baby for a reason, we all were, and I have to take it one day at a time and pray for the best!! I'm extremley lucky to have a loving fiance and beautiful son that makes everything seem worth while!!! Thank God for family and friends! And these websites! I have learned so much and have gotten so much more positive hearing parents stories... God bless!

[usolyfan]

I just want to encourage all of you with a recent diagnosis. I know full well that you are in a very scary place right now. Try and learn the answers to the questions you may have but please don't let statistics and "worst case scenarios" get in the way of you enjoying the rest of your pregnancies. You will love your baby for who he/she is and for what they CAN do. Our only child has SB. She is three now and the absolute joy of our life. She is a very typical three year old that wheels instead of walks (well, most of the time, she does walk with extensive bracing). If you need to talk to someone I would be more than happy to chat with any of you. You can contact me by email at (look in profile)

[angel]

It is great that everything will be treated in the same hospital. I have SB myleo and my son has SBO. The day after he was born he was whisked away to a different hospital in a different state. I had hourly phone contact with the NICU but that was not much comfort. I didn't get out of the hospital until he was 4 days old and told specifically not to go to the hospital (it was an hour and a half drive) needless to say i went home showered and to the hospital we went. With your child close by I would think it would ease some stress.

Angel

[simmy]

Hi I am new here too. I have a 3 month old baby boy who I love with all my heart. He was born with sb and needed a shunt. No one diagnosed this condition during my pregnancy. Infact everytime I had a scan I was told that the baby was healthy, the spine was perfect and on one occasion the doc told me there is certainly no sb. I had a c-section and was told as soon as he came out. It was a complete shock which I am still trying to come to terms with. I feel lost and confused and can not stop crying but then he starts playing or smiles at me and I just feel love and a great feeling that I need to protect him. To be honest I do not know what is best the way it happened to me or to know all through the pregnancy.

[LisaJoy]

Welcome, Simmy! Hope you find the forum helpful.

[Spiffynikki]

Hi I am new here too. I have a 3 month old baby boy who I love with all my heart. He was born with sb and needed a shunt. No one diagnosed this condition during my pregnancy. Infact everytime I had a scan I was told that the baby was healthy, the spine was perfect and on one occasion the doc told me there is certainly no sb. I had a c-section and was told as soon as he came out. It was a complete shock which I am still trying to come to terms with. I feel lost and confused and can not stop crying but then he starts playing or smiles at me and I just feel love and a great feeling that I need to protect him. To be honest I do not know what is best the way it happened to me or to know all through the pregnancy.


Welcome to the forums! This is exactly what happened with me. I didn't have th AFP, they said it wasn't necessary and had a high rate of false positive, and said she was normal on the U/S scans. Even during the second when the tech mentioned she had a really large head nothing was looked into, I found out when they opened me up for my C section. It was really really hard to wrap my head around, but now I wouldn't trade my Lily for anything. She is almost six now. Just read and learn as much as you possibly can, this is a great place to start. As he gets older I highly recommend the book spinabilities.

Also, a little side note, because your doc may never think to tell you this, if he doesn't have feeling in his feet or toes, watch him very closely when he starts teething, SB babies with no sensation can hurt themselves badly.

[Dodger67]

I used to bite my toenails but my mom says she can't remember that I ever drew blood. However I can understand that it is a real risk.

[simmy]

Thanks so much for your advice. In fact noone told me anything and it does make sense. He has already starting teething and will keep an eye on him.

[angel]

I used to bite my toenails but my mom says she can't remember that I ever drew blood. However I can understand that it is a real risk.

It is a risk. I can't feel my feet and when I was little I would rip my toenails off. I remember doing it, and it was so funny to me because my mom was horrified. I know sounds mean but i wasn't. I didn't feel it and i got a great reaction out of her. I did stop doing that however you still have to be careful. About a month ago I was getting in the shower and looked down and at some point and time ripped another one almost completly off. Don't know where, when or how it happened. If you can't feel it It is easy to not think it is important. I remember thinking DAMN now I gotta take off my polish cause now they don't match!!!!!! Someone who could feel it would have probably had unbelieveable pain.

Angel

[pmdsmom]

Zenia, While all of the information you are receiving is overwhelming it is important that you read, reliable sources, and take part in the decision making process. Read about shunting for hydrocephalus, if your daughter can wait a while the likelihood of re shunting is lower. My fourth child was born to us with myelomeningocele and hydrocephalus, he is now 2 1/2. We were shocked. I delivered him and looked at my husband and just knew that something wasn't right. I can only tell you that our son has been an absolute blessing and that God has chosen you to be this babies mother. She will teach you more about life than you could ever have learned without her. There is medical intervention ahead, do your reading and be her greatest advocate. I wish you all the best and am willing to offer any advice.

[celticwinter2526]

The best advice I can give is keep your head up. You will hear a lot of things that may turn out to be true or not true. Take things as they come. The best thing you can do for your child is to love them unconditionally... if you remember that and keep taking deep breaths you will be fine. Pregnancy is stressful enough as it is so just find a way to give yourself a breather from all the information and just love your baby in that moment. the rest will present itself in time and you will ease into things.... I know I did. I have a 4 1/2 month old son and I had a lot of people working against me but I stuck it out and Im so glad I did. I wouldnt change a thing. Good Luck and keep us up to date.