new here 29 weeks pregnant just diagnosed need help...

[smur]

Hello,
August of 2010 I miscarried my first pregnancy. About a month and a half later, I conceived again, and didn't know. I was still upset about the first i didn't even realized I was pregnant again. I found out I was pregnant at 25 weeks and had my first ultrasound at 28 weeks. I never would have thought I was going to be this pregnant at my first ultrasound, but I was so happy I was having a baby girl, and me and her was going to share the same birth month. The first ultrasound found extra fluid in her brain, and sent me to the hospital to the MFM to do more ultrasounds a week later, that was on Monday. They told me that the opening is in the tailbone, lower back area. I have to go to Children's Hospital of Boston for a lot of testing, and talking to doctors. I'm so overwhelmed, and I don't even know what is happening to my little girl, anymore. can someone please help me... I know what SB is, but what can I do to make this easy for me and my man? We have been so stressed and fighting with each other and we never fight ever, and we are letting the emotions get the better of us. I have been through a lot in 4 weeks, can someone please give me hope?
Thank you for your time,
Susan:signs116:

[Noefnway]

Hi Susan
You have quite a heavy heart right now.There is hope.I'm a 48 year old man living with SB.Tonight I'm working with a nurse who works in pediatric intensive care.She suggests you & your gynecologist contact a perinatologist to talk about in-utero surgery to place a shunt in your daughter's brain to relieve the excess fluid(if necessary-the excess fluid may not be enough to cause problem because her head is soft and fluid may be absorbed) Also the lower the spine defect the better.I.E Less amount of possible nerve damage.

Best Wishes,
Patrick

[Dodger67]

Hello Susan
Welcome! :happy065:
The "fluid in the head" is called Hydrocephalus. It really is nothing tyo worry about - if it becomes necessary a shunt will be inserted into the head to drain off the excess. about 80% of people with SB have such shunts, its routine standard care and works very well. Because a small baby's skull bonces are still soft and flexible there is plenty space for the excess fluid to accumulate without damage.

The sacral (sacrum is the tailbone) lesion is as far as SB is concewrned very good news because the lower the lesion the better. A sacral lesion usually means some loss of sensation and movement in the feet - not really serious as foot bracing works very well. She will be able to walk.

The other problems with bladder and bowel function are also very managable.

Living with SB is not terrible or painful or any of the scary things that ignorant people (particularly OB's and other pregnancy specialists who have never met anyone living a full and happy life regardless of SB) will try to tell you.

I'm Roger, 43 years old, South African, former IT nerd - now fulltime student again.
My lesion is at L3 - much higher than your daughter's - I use a wheelchair fulltime.

BTW wheelchairs, braces, crutches etc. are tools of freedom, not something one is "bound" by. I am wheelchair liberated, not wheelchair bound. If I did not have a wheelchair I would truly be "bound".

There is an important concept you need to get your head around:
Those of us that are born with a disability do not suffer a loss - you cannot compare someone who broke their back in an accident and afterwards became a wheelchair user with someone like me. I didn't lose the ability to walk - I never had it.
You don't look at a bird in the sky and get sad because you miss not being able to fly. I don't (actually can't) imagine what it is like to walk and run and jump - it is as strange to me as flying like a bird is to you.

Please take a look around here - look at the photos read the blogs that some users have linked in their signatures. Not one of us (who have SB) regrets being born and the parents of babies and young kids with SB are just as happy as any parent and love their baby with SB just as much as their other "normal" kids.

We will support you and your child in any and every way we can.

[janjanwhit]

It is going to be ok. Your life is going to be absolutely horrible for the next few weeks. Doctors will tell you terrible things that wont actually happen, you will be in so much emotional pain that you think you cannot cope, your family and friends will insist on telling you their opinions and what they would do- even though they actually dont know because they all have perfectly healthy children and then you will see your baby for the first time and think that they are the most beautiful thing that you have ever seen and wonder what all the fuss was about! My Fergus has sb and was diagnosed at my 20 week scan. He is now 2 and is starting to stand and trying to take steps. His sb is much higher than your childs. He can feel and move to his ankles. At 5 months old he had a shunt put in. Very small op and we have had no problems at all. He was in the NICU for 14 days after being born. He is so normal i forget that he has sb sometimes. He is super cute too!

[janjanwhit]

I have 3 boys and i am closest to Fergus. The doctors told me so many lies about what sb meant that i thought he wouldnt even make it to full term. Every day i have him feels like a victory and everything he does means ten times more because of what we went through together. I would have him again in a heartbeat. If i have another child with sb i will be sad for the child because it is a bit harder when you have sb but i wont be scared. Its honestly not as bad as the doctors try and tell you.

[Amnada]

Hi Susan,
Congrat's on your pregnancy. Girls are so much fun!

It is very, very hard to hear that there is something wrong with your child. I imagine it is even harder when you add to stress and surprise of the pregnancy at the same time!

We got our diagnosis at 22 weeks. The doctors (OB, perinatologist) gave us very negative expected outcomes. It was only when we talked with doctors (pediatric neurosurgeon and pediatrician at the SB clinic) that we got an idea of what spina bifida means for children. And it is not horrible.

My son has a low lesion (S1) as well as hydrocephalus. He is almost 17 months old. He is happy and healthy and has completed our family. He wears small braces and he is standing on his own. We are expecting him to be walking in a walker in the next couple of months.

Nick does have hydrocephalus (fluid in the brain) and got a shunt when he was 3 weeks old. He also has chiari malformation (banana sign, lemon shaped head) but hasn't had any problems with it.

I would recommend looking over some of the blogs (mine is in my signature, and I follow a number of blogs as well), I found that really helpful when I was pregnant to really 'see' what spina bifida looks like. It might help your partner as well.
This is a very stressful time on all of you. Try to take some time for yourself and your relationship. Have you thought of any names yet?

[Jill]

Hi Susan,
I can only echo what janjan and Amnada said. The next few months are going to be awful, followed by a couple of incredibly emotional weeks after she's born, but then you'll breathe again. It'll be alright. Your little girl will awe you and she'll be perfect. The doctors while you're pregnant are 50:50 - some will be positive and supportive and wonderful and the rest will try to convince you that you have a monster in your belly. Ignore those folk, they have no idea what they're talking about.

I have a 15 month old son with SB. He's an angel! ... although he is starting to learn to be a monkey ;)

[LisaJoy]

Hi Susan! You've come to the right place for advice.

I just want to clarify something that was said in an earlier post -- the shunt for hydrocephalus cannot be placed in utero. The in utero surgery for spina bifida (surgery to close the spine done while the baby is still in the womb) is only offered up to about 24 weeks, so you would not be eligible.

It is nothing to worry about, though. It sounds like your girl has a very low lesion, which is good. Both it and the hydrocephalus will be treated right after she's born and she'll be fine! Children's Hospital Boston is one of the best in the world, so you're in good hands.

You and your partner are under a great deal of stress, with a dose of shock and grief added in. I can't really give you any brilliant advice except to say to give yourselves and each other some forgiveness and understanding.

I suggest that you give your little girl a name and use it, especially around medical practitioners -- they have a tendency to think of these kids as a diagnosis instead of as a baby. Using the name will help them (and your friends and family) to see your little girl as the princess that she is!

[smur]

Thank you everyone for your story's, and hope. I'm still very confused, tired, and overwhelmed with all of the information. I'm glad I can come here and for support, and advise. We truly going to need all the help we can get right now. My little girl name is Lydia, and she is my everything, I just need help understanding whats happening to her.
Again Thank You all so much, you made everything a little easier! I'll be here much more.
Susan

[jveprek]

First off, CONGRATULATIONS! I know the beginning is so hard because you are overwhellmed and thrown off guard and have no idea what life/ your child will be like. Let me assure you, though, that had I known back then what I know now, I'd feel no fear! Our children truly are amazing. They fight and find their own way of doing things. They light up the room when they enter. The show us what life is really all about... never giving up and doing your best. I would encourage you to visit some of our blogs and see, for yourself, what our lives and our amazing children look like.

[Sdgilliland]

HI Susan,

I just want to echo what the others have said. It's never easy finding out something is wrong with your baby, but you will get through this and everything will be fine! My little girl will be 2 in June, and she is so amazing! She walks really well w/ a tiny walker, she talks non-stop, and she loves to dance! We found out about her SB at 24 wks. She is an L4 and she has a shunt, but mostly she's just a funny, happy little girl. One thing that helped me through the pregnancy was reading blogs of other families living w/ sb. It became much less scary when i saw how happy, and normal these kids were, and I could finally see hope. Feel free to check our blog out...All the best to you!

www.ourlemonadestandblog.blogspot.com

[janjanwhit]

When i needed information and realistic facts i came on here. I told my doctors that and they were not impressed that i was willing to make my decisions based on what strangers told me off the net. Turns out that my info i got off here was correct and nothing that they told me would happen actually did! Something that helped me was looking at the babies photos on this site. when i had a really bad appointment that dashed all my hope i looked at the photos. seeing how cute and normal other peoples children with sb were gave me the strength to challange what the doctors had told me and to carry on x

[Kelly88]

Hi Susan,

I just learned my baby has SB last week. I completely understand what you are going through. I was devastated. I couldn't eat or sleep the first few days. I knew I needed to be strong for the baby but it was hard. It just hit me like a ton of bricks. I thought I did everything right preparing to become pregnant. I got the diagnosis on Thursday and on Tuesday I was finally able to eat and sleep. I realized that it will be okay. He is going to still be my little boy and I love him just as much. It might not be the way I pictured it but it will still be good. You will also start to feel better I promise. We are all in this together!


Love,

Kelly