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TTC - Trying to Conceive TTC - Trying to Conceive

My daughter was diagnosed with Spina Bifida * update* post - op

Posted by on Oct. 23, 2011 at 6:54 PM
  • 43 Replies

My daughter was 5 weeks old when she was diagnosed with Spina Bifida. October is also Spina Bifida awareness month -

 

On July 8th, 2011 I was blessed with a gorgeous, full term, healthy baby girl. Olivia Maylani Silva was 8 lbs. 1 oz and 19 inches long. Her apgar was 9 and she was perfect. Right away I noticed she had some "unusual" markings on her face, neck and back. The doctors reassured me that it was nothing more then birthmarks and "trauma" from pushing her out in two pushes.

As the days went on I noticed the purple bruse on her back started to turn bright red and was raising from her skin. I also noticed that she had a large dimple at the base of her spine. Things just didn't seem right. She was my third child and my Mother's intuition was in "high gear". Against family and friends opinions I scheduled an appointment for Olivia with her pediatrician.

Her doctor is great and took his time with her. Her weight was "OK,she had not gained much and still was not up to her birth weight.". Besides her weight he said she looked great. Then he asked why we had brought her in. I explained about her back and the marks on her spine. He seemed a bit concerned but said he would have to do some research.

Two days later I got a call from her pediatrician while shopping in the makeup isle at Target. Everything about that day was normal. I was hoping to get some makeup and try to "lift" my spirits. My three year old was throwing a fit and Olivia was crying when my phone rang. It was Olivia's doctor. He had done some research and found that 50% of cases like Olivia's turned out to be pretty serious. He wanted to perform an MRI on my 5 week old as soon as possible. It was all for precaution he told me.

One week later we were in a World renouned hospital geeting an MRI for my baby girl all as a "precaution". Everyone told me not to worry. The nurses said "she would be fine". My husband said " It is the doctors job to be so precautious". Everyone was so optimistic, and so, I was too.

Fast forward one week. I am helping my three year old off of the potty. My phone rings and it is the pediatrician! I give him the brief "explanation" for why I am so distracted. He briefly says " I will call you back in exactly 3 minutes!". Immediately I know her MRI did not come back clean. Those were three of the longest minutes of my life.

He finally calls and informs me that Olivia's 4th Lumbar never fully developed and that her spinal cord is tethered. We will have to check for nerve damage and she will need surgery to free her spinal cord before she is 6 months old. If she had nerve damage her surgery would need to be sooner.

That day will always play over and over in my head. I can not even begin to explain the fear that I felt for my daughter.

I did the AFP screening. I had the blood work and ultasounds done at a world renouned hospital! None of them caught it. Spina Bifida Occulta translates to "Hidden open spine". Spina Bifida Occulta varies in severity on a case by case basis.

Olivia is now 4 months old and will be having her surgery soon . She is strong and beautiful and has not suffered any nerve damage yet. We are hoping to do her surgery before any major problems set in. As she grows tension is put on her spinal cord. The more tension on her spinal cord the more problems she will have.

I never knew anything about Spina Bifida until it was staring me straight in the face. I have since learned that there are some precautions you can take to help prevent it.

If you are planning on trying to conceive you should start talking a folic acid supplement EVERY DAY BEFORE YOU TRY TO CONCIEVE!

Healthy diet and exercise also help.

Though there is not a proven cause of Spina Bifida there are precautions you can take! Spina Bifida occurs in the first 28 days post conception, usually before most women know that they are expecting!!!!!

If all women who could become pregnant were to take a multivitamin with the B-vitamin folic acid prior to conception, the risk of neural tube defects could be reduced by up to 70%.

Spina Bifida is the most common neurotubal defect and occurs in 7 out of every 10,000 live births. It is actually much more common but a lot of women terminate when they find out they are carrying a child with spina bifida.

We are fortunate that Olivia has a more mild case and will be able to live a mostly normal life. I am hoping that you will take these words to heart. That the next time you consider having another child, please take proper care of your body and your vitamin supplements. I do not wish this on any parent. There is no greater pain then knowing that you can not take your child's pain away".

Meet my beautiful daughter Olivia - One of the strongest girls ever!

 

Since this post has recently resurfaced I figured I would update.

Olivia had her surgery on 12/6/11.  It was probably the longest day of my life.  She was five months old and was having surgery to detach a growth on her spinal cord.  This benign tissue was caused by a deformity of her L4.  If we had not had it removed she could have had major nerve damage including the loss of bowel and bladder control, paralysis and chronic pain. 

She had her surgery in the morning and I think it lasted a little more then 5 hours.  After her surgery they sent her to the PICU at UCSF Beinoff children's hospital for a few days.  She was pretty sick, she was'nt passing urine, her blood pressure and heart rate spiked and she had some swelling in her head.  It was very scary and sad but the staff were wonderful and helped us as much as they could.  We were not able to move or lift her for the first day and a half, only hold her hand and talk to her.  The first few days they had her on morphine and then switched her to lorratab and something else (?).  The morphine made her itch like crazy and she scratched up her face quite a bit.    After 24 hours she finally started passing fluids and her swelling started to go down.  On our second day in the hospital the fellow Neurosurgeon came in to let me know that her biopsy came back benign!  What?  I didn't know there was even a chance for it to be malignant!!  Glad, they didn't tell me until after we knew she was in the clear!  Since it was around Christmas time the San Francisco Police Dept. brought in teddy bears and stuffed reindeer for all of the children, she still sleeps with it :) 

Her post op check ups went well and she is thriving.  She passed her urodynamic and since she did so well she did not have to have an MRI on her one year post op, just had to see the neurosurgeon.  She is 20 months old now and runs, climbs  and dives off of everything.  We are not 100% out of the woods as she still has the possibility of having her spinal cord re-tether and it is also common for adolescents to suffer from chronic pain post tethered cord surgery.  It is kind of a wait and see thing.   Pre op

Right after surgery (sorry, i know it is a sad picture)

With Daddy post op

One month post op

a few weeks ago

 

Olive and her Brother

 

by on Oct. 23, 2011 at 6:54 PM
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Replies (1-10):
MomX3ThatsMe
by on Oct. 23, 2011 at 6:59 PM

Thank you for sharing this information and your DD's story... I am so sorry she has had to go through so much in her short life!  I hope the surgery goes well.  She is in my prayers!  And btw, thanks for the pictures, too.  She is gorgeous!!!

RedheadMama18
by on Oct. 23, 2011 at 7:00 PM
1 mom liked this

 I'm so sorry to hear you have gone through that!  She is beautiful.  I remember hearing about spina bifida when I was pregnant with my DD and how important it was to take prenatals with folic acid.  I didn't miss a day.  Now that we have been trying for #2 I still try to take my prenatals even though I sometimes forget.  Thank you for sharing your story!  My heart goes out to you and your family!

Marah2008
by Bronze Member on Oct. 23, 2011 at 7:03 PM
1 mom liked this
She is so sweet!! And I'm so sorry!!! I will be definitely getting some frolic acid
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mommyjenn84
by on Oct. 23, 2011 at 7:06 PM
Thank you so much for sharing
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ValerieRNmom
by on Oct. 23, 2011 at 7:12 PM

What a beautiful little girl! Thank you so much for sharing her story!

gavansmommy
by on Oct. 23, 2011 at 7:33 PM

BUMP!

Mummy2008
by on Oct. 23, 2011 at 7:54 PM
1 mom liked this
Thank-you for sharing your story my heart goes out to you, she will be in my thoughts. Btw she is absolutely adorable!
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GwenMB
by Gwen on Oct. 23, 2011 at 8:06 PM
1 mom liked this

Thank you for sharing!  Olivia is absolutely beautiful.  I will say a prayer for you & her that everything goes perfectly with her surgery.

What a timely PSA for this group.  I think I forgot to take my folic acid/B12 supplement this morning.  (I usually do remember, though, so I'm sure I have plenty of folic acid in my system.)

Leese21
by Gold Member on Oct. 23, 2011 at 8:10 PM
1 mom liked this
She is absolutley gorgeous.god bless her
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della84
by on Oct. 23, 2011 at 9:37 PM

She is beautiful!  I have to go right along with you and say that it is very important to remember to take folic acid.  I had a daughter who woud be 3 this coming january and she passed away due to anencephaly.  I take a total of 5mg of folic acid daily to prevent said things from happening.  I have a beautiful almost 2 year old son now and we are currently trying again for our 3rd. 


Mandy

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