Friday, March 16, 2012

Special Needs Spotlight: Jacob





Our son Jacob had in-utero surgery to repair an open neural tube defect when he was 25 weeks gestation. After surgery, I was able to keep from going into labor for 11 more weeks.  Being pregnant was difficult for me.  There were so many questions and unknowns.  Recovery from fetal surgery was painful, and everyday I hoped to keep Jacob from being born prematurely.  But after such an invasive surgery, he could have been born at any moment.  The fetal surgery didn't promise to fix everything, only to offer a better outcome.  In fact, the fetal surgery for spina bifida that I had was still part of a clinical trial at the time.  Before we found out about the option of fetal surgery, the diagnosis of spina bifida meant a loss of nerve function to his legs, bladder and bowel, and a co-diagnosis of hydrocephalus in his brain, treatable by shunt.  We hoped that having fetal surgery would reduce Jacob's hydrocephalus.  However, when he was four months old, he had brain surgery to place a shunt, which he'll always have.  Jacob is now 19 months.  We catheterize him five times a day to keep his bladder healthy, and see a physical therapist to help him with trunk control and walking.  A month ago at physical therapy, Jacob took his first three steps all by himself.  I burst into tears as he fulfilled one of my biggest dreams for him.  He is our sweet miracle baby, and we can't wait to see what he'll do next.

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Miggy:  Nicole, can you take me back to the day you knew your son had spina biffida?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Nicole:  I was shocked and terrified when I found out my baby would be born with spina bifida. My husband and I cried into each others arms when the ultrasound was over.  I felt like my son wouldn't have all the opportunities that other children have.  I thought about basketball games and easter egg hunts and other things he would miss out on by not being able to walk.  Now I realize that Jacob's opportunities are not diminished.  We have much higher hopes for him being able to walk and participate fully in everything he wants to.  Also, he has other opportunities to bless people's lives. Already, we feel that Jacob's miracle story has helped others.


Miggy:  You also have an extremely unique situation in that you had in utero fetal surgery.  Just the idea of that completely blows my mind!  Tell us about this surgery--how did you feel beforehand, was it risky, and most importantly did it help?  

Nicole:  The first thing I felt about fetal surgery was that it was too risky and not for me. But once I learned more about it through other spina bifida mom bloggers, I realized I could do it. And then I wanted to do it right away!  Having to wait three weeks before we were scheduled to go to San Francisco for the surgery was hard.  The biggest risk was that it would cause premature labor.  I was on a lot of medicine to keep me from having Jacob right after the surgery, at 25 weeks.  Opening the uterus and then closing it again with a baby inside is also risky.  They drained the amniotic fluid and then put a little back in before it was over.  They monitored the fluid levels until they were up enough for me to be released from the hospital.  There was always the possibility that amniotic fluid could leak.  Luckily, Jacob stayed inside almost all the way until his scheduled c-section at about 37 weeks.  We hoped that having fetal surgery would stop the nerve damage that was happening to his exposed spinal cord while in the womb.  His leg sensation and strength are not perfect but we believe they are better than they would have been!  Fetal surgery also delayed the need for him to get a shunt until he was four months. We hoped he wouldn't need one at all, but it has been fine. The shunt hasn't needed to be revised or fixed yet.  We are thrilled with the results of the surgery.  We're happy that we did everything we could to help Jacob.



Miggy:  Explain how your Jacob's special need affects your day-to-day life?  
   
Nicole:  Jacob's bladder is "neurogenic," which means it doesn't have all the nerves working correctly. He can't empty his bladder all the way.  So I have to catheterize him five times a day.  I just do it when I change his diaper.  It's not fun and he doesn't like it, but he's used to it.  Also, he has problems with his bowels.  They don't move very well on their own, so we have to give him a laxative.  Jacob isn't walking yet, at 20 months.  He can take a few steps by himself, but mostly crawls or walks holding on to something.  It's tough on him when playing with friends.  He wants to walk like they do and it's frustrating for him! It breaks my heart. 


Miggy:  What are the biggest worries you face for Jacob?  
     
Nicole:  I worry about his independence someday.  My dream for him is to be able to support himself, marry, and have a family.  Short term, I worry that he won't be able to be potty trained.  He'll most likely need to cath himself when he goes to school, and that has the potential to be difficult.  I worry that he will need a shunt revision, and that I won't notice the symptoms.  I pray all the time that if his shunt breaks and his brain is under pressure from hydrocephalus, that I will notice right away. 


Miggy:  How can people best approach or respond to Jacob? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  
   
Nicole:  The best way to treat Jacob is to treat him like any other kid.  Some friends and neighbors try to tell me that Jacob is fine and that I shouldn't worry.  It's a nice sentiment, but sometimes I just want people to realize that these are real concerns and I'm not just an overprotective mommy.  Hurtful things are said at times, but it can't be helped.  Sometimes when another mom complains about her 12 month old child not walking, I feel frustrated.  Sometimes a friend tells me that once Jacob is walking and running, I'll wish he never started walking.  No one could be more wrong!  I can't wait until he can walk!  When that day comes I will be thanking Heavenly Father every minute.


Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?  
   
Nicole:  I have learned to be patient.  I am still learning.  I have to be patient as Jacob progresses at his own pace, and patient with Jacob's doctors when they don't seem to listen to me.  I have to be patient when others say things that are frustrating to me and I have to be patient when Jacob is screaming because it's diaper change time.  I have to be patient as I wait to see what Jacob's life will be like and wait for God to answer my prayers.  I have to be patient every day and it's totally against my nature! But I'm learning.  That is one of Jacob's greatest gifts to me...just having him makes me a better person. I am realizing that Jacob was born the way God wanted him to be born.  I am starting to notice that Jacob is a fighter.  His cute little personality is starting to come out - and he is strong, and stubborn, and willing to work for what he wants.  All he ever wants to do is practice walking!  It's incredible.  He teaches me things daily.  He is truly a blessing in my life. 

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I want to thank Nicole for sharing her sweet little Jacob with us.  What an amazing story.  I didn't even know in-utero surgery was possible!  Makes me wonder what medical/scientific advances we'll see in the future.  I hope that sweet little boy continues to make progress and thanks again Nicole!  Also, this was our 20th Special Needs Spotlight!  How exciting--thank you everyone for all the support and love through this project.  I couldn't do it without you.  Here's to 20 more!    

As always if you or anyone you know would like to be part of our special needs spotlight please email me at thislittlemiggy at gmail dot com.  Also, if you've emailed me and haven't heard back please be patient--I'm still getting to your emails!

Have a great weekend!  

4 comments:

  1. Linda P.7:34 AM

    What a precious little boy is that Jacob! I love that picture of him and the lion!

    Nicole, I think it is so awesome that Jacob was able to have in utero surgery and that you think it helped!

    Thanks to you (and Miggy!) for letting us peek into your life and learn a bit about your family. Having a special needs boy myself (now 23!), I so appreciate hearing from other moms with special needs kids and learning about their own experiences.

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  2. I just ran across your blog today and wanted to say that your special needs spotlight is awesome. As the middle sister of two siblings with special needs, I find such strength in the experiences of these amazing families! Life does not have to be perfect to be wonderful! Thanks again.

    em

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  3. love that jacob! & thank you for all the good you are doing!

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  4. Anonymous1:36 PM

    I have a friend who was born with Spina Bifida and she is now 32, married and living independently. She's in a wheel chair- but she was just like any of us growing up from kindergarden to 12th grade. I think walking or not, Jacob will do great with parents like you!

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