Spina Bifida Awareness Day 10 Noah's Story

Dear Life,

This next little man is adorable and his mommy is amazing.  She is such a beautiful friend....(that does seem to be the theme with my SB mommy's isn't it).  We have talked on the phone about our boys, about our lives, and whenever we are having an issue I will be sure to get a text from Julie just to remind me that she is there and she loves me and our family.  I appreciate her so much!  Enjoy Noah's story!


     "One afternoon in April 2006, I received a somewhat grave phone call from my Obstetrician.  He was calling to tell me that a routine blood test I had performed (at some point recently at his office) called an AFP or MSAFP test came back positive.  He explained briefly how the test works, that it is testing for neural tube defects such as spina bifida but that only 5% of women with a positive test actually are carrying a baby with spina bifida.  


Nonetheless, he wanted me to go in the following morning to see a perinatolgist who would perform a high-level or level 2 ultrasound.  Ok.  I googled "spina bifida."  Saw a lot of pictures of people in wheelchairs (which scared me).  Read about closed and open spina bifida.  Turned off the computer and didn't worry about it.  
     
     We arrived the next morning (Friday) at the ultrasound office.  The tech comes in and does the ultrasound.  I am at 19 weeks now and at 20 weeks we were supposed to find out if it was a boy or girl.  While the tech is looking at the screen, I ask her if she can tell what sex our baby is.  She said yes and asked if we wanted to know.  I am SO excited!  Yes!  I look at Todd.  His eyes are wide and serious.  I realize now that he is really nervous.  "Do you want to know?" I say.  He says, "I just want to know if everything's ok", he says.  Me, "Soooo, yes?"  I'm a pretty laid back person.  Sometimes to a fault.  But I just kept thinking that there's a 95% chance he doesn't have spina bifida.  I look at the tech and say, "yes!"  She smiles and says, "It's a boy!"  I just smiled.  We had a 13 month old girl.  Now we were going to have a boy.  I was just feeling so blessed.  The tech leaves us alone.  

     A few minutes later the doctor walks into our dark room.  Before he even shuts the door he say, "Well it IS spina bifida."  Then he introduced himself.  Huh?  He starts explaining it.  Because I had done some research I knew what to ask.  
     "Is it closed or open?" 
     "Open."
     "Clubbed feet?"
     "No signs yet."
     "Hydrocephalus?" 
     "No, we will monitor that every month/week"  

     It might not have gone exactly like that but I do remember that the doctor and I were discussing it and poor Todd was standing there silent and shaking.....or nervously jittery.  At some point we sat in the doctor's office and he said there were "other options" but that we would have to decide quickly.  He was trying to say that they could still end the pregnancy but we needed to decide that quickly.  I just remember thinking.  Is he serious?  We were told to walk out to the waiting room or go get coffee.  They were going to try and get one of the pediatric neurosurgeons (at Children's Hospital across the street) on the phone to see if they could meet with us now to explain the ultrasound more.  It was a Friday so they were most likely in surgery and if they couldn't get one, we'd have to wait until next week.  We walked out to the lobby of the building and cried a little.  

     A few minutes later they came walking over to us.  One of neurosurgeons just happened to get out of surgery a few minutes prior and told us to come on over.  His name was Dr. Boydston.  He was wonderful.  He spent an hour with us.  In the middle of his busy day.  To tell us the hard facts.  Basically our child did have spina bifida.  It wasn't the best case he'd scene but it wasn't the worse either.  It was right in the middle.  Lumbar region.  He couldn't give us specifics.  He said that most kids with SB were of average intelligence.  They might fall a little on the low side of average but still average.  They're happy kids.  

     My husband, Todd, said he had two questions, "Would he die?  We're we just bringing him into this world to die?  And will he always have pain?"  To which Dr. B answered, "No and no.  He can expect a pretty normal life span and he will not live in constant pain.  This baby is lucky that you are his parents.  You can do this."  We nodded because we felt it too.  Or at least I did.  I'm not sure what Todd was thinking but as we drove to my parent's house (they were watching our daughter) I felt a sense of peace come over me and also a sense of strength like, yeah, we CAN do it.  It must have been God or my guardian angels because it just engulfed me in peace.  

     Our family wasn't so convinced.  They didn't feel peace or strength.  They were devastated.  It was hard to hear everyone's pity, their sadness, negativity.  I understand it and I don't blame them for feeling that way but it was hard on us and we just wanted to run back to the doctors who were so positive.  So I called the SBA Atlanta chapter and left a message on their machine.  They heard my message and asked one of the moms in my area to call me.  Julie Armas called me on the phone.  She had three boys.  Two had been born with spina bifida.  I asked her everything I could think of.  I think it was mostly about what life was like for her sons.  Could they walk?  How do they get up and down stairs.  School?  Etc.  We would talk every few weeks throughout the remainder of my pregnancy. 

 *I later found out that her son Samuel was somewhat famous for being the baby who reached out and grabbed the hand of the surgeon during the MOMs fetal surgery in-utereo trials.  I hadn't ever seen the photo but many had.  



On September 14th, 2006, Todd and I (and family) went to the hospital for my scheduled c-section.  I was so relieved this day was here.  I just wanted to meet him and touch him and bond with him and love him and forget all about all the facts and figures and medical terms.  I just wanted to hold my baby.  


As planned, he was whisked away to the NICU to prepare to be transported by ambulance across the street to Children's Hospital.  Todd would go with Noah and stay with him as he was being transported. 

 It never occurred to us that that would leave me all by myself.  In retrospect, I wish someone had suggested we have another family member in the delivery room to stay with me.  But my Mom and Dad and Todd's Mom and sister were all in the waiting room.  They got to see Noah and Todd but no one knew how to get to me.  I was sent to a waiting area until a room was available.

     Just to give you some idea, there were over 18,000 births at this particular hospital each year.  The most in Atlanta.  We were like cattle.  Wheeled into a large holding area together waiting for our rooms.  There must have been 8 of us women who had just given birth PLUS their babies and significant others and various random family members all crammed into ONE large room.  They pulled curtains in between each group.  They each had their own bed and curtained-off space.  Well, since I didn't have a baby or a husband with me, they just pushed my bed in between two of the spaces so I had hanging curtains surrounding my bed like a canopy.  The nurses had to roll my bed from side to side or forward and backward just to get passed me to go check on a mother.  Within 5 feet from me with just a curtain in between us a mother started to try and nurse her baby while I listened to her talk to and coo at her newest little person.  I was both touched by it and deeply saddened at the same time.  

That is until someone brought me two pictures of my son.  One of the nurses in the NICU had taken two pictures of him and they somehow printed them out and got them to me.  I hugged the pictures, literally.  It made everything better.  

     Eventually I was given a room and saw my family.  I was told Noah's surgery went extremely well.  I was able to visit him within a couple of days.  As soon as I could stand up and ride in a wheelchair to a shuttle that would drive me across the (very bumpy, ouch!) street.  I'm sure people wondered why a 33 year old woman was wearing a hospital gown, looking like a homeless person who hadn't showered in weeks, and being wheeled through Children's Hospital.  I looked pretty awful.  I didn't care though.  I was going to get to see him!!  

     Noah came home after 10 days.  We were like two 16 year olds bringing home a newborn.  We were nervous.  We both had to learn how to cath him before he left the NICU.  That was comical.  Well, looking back it is.  :)  Poor Todd.  He's 6'3" and so he has large hands.  He could not get the sterile surgical gloves on without being told by the nurse he had contaminated them by touching the wrong part of them to pull them on.  It was so frustrating for him and all for nothing because we later learned that we wouldn't need to sterile cath him at home.  In the NICU they have to sterile cath all babies that need cathing but at home, we would be just doing a clean cath which is far easier to master.  A breakdown in communication caused Todd a lot of anxiety.  Poor guy!  

     Once home Noah was just a normal newborn.  He kept us weary with night feedings but of course we fell in love immediately.  For the most part life was pretty normal.  He didn't look any different.  When we went on errands, no one knew he was different in any way.  During the first two weeks home we did have one night, in the middle of the night, when neither of us could get his catheter to go in and Noah was screaming and crying and we panicked.  We really did think that we were hurting him.  In retrospect, our little man was crying because it was cold and the middle of the night and we were changing his diaper and he just wanted to be wrapped back up in a blanket and held.  But we survived that night and felt pretty good about our little family.  

     Life changed drastically when Noah came into our lives.  Noah just turned six.  If I had to describe him today I would say he is funny, smart, loves to talk, is the most determined child I've ever met.  He can be very stubborn (which should help him in life), is extremely tough (there literally isn't anything he won't try and do), faces life head-on and has this incredible affect on people everywhere we go.  I don't know why Noah is the way he is, personality-wise.  I don't know if it's nature (he was born with all these wonderful qualities) or if it's the experiences he's had in his short life.  He's just a typical 6 year old boy in many ways -  he loves Curious George, wants to be Buzz Lightyear for Halloween this year and loves to play in the dirt.

  He won't eat anything good I put on his plate, doesn't like to do homework and is not always nice to his big sister.  But there is definitely something special about Noah.  People are drawn to him.  Everywhere we go.  And he's drawn to them too.  He strikes up conversations with strangers every time we leave the house and I can't really explain it but he just brings a smile to people's faces just by doing nothing but being.  And believe me, the feeling is mutual.  They want to give him attention and he wants their attention.  I think the kid needs an agent.  :)  

     Life is really good with Noah in it.  Yes, it's peppered with stuff related to spina bifida.  Our daily routine has some things in it for him that his sister doesn't do.  But mostly we are just a mom and a dad raising a girl and a boy.  And a giant, shedding mess of a dog Noah begged us for for years.  I remember after the perinatolgist told us that we needed to decide if we were going to continue the pregnancy I heard the song, "This Little Light of Mine."  

Every time I hear that song I think of Noah.  I think to myself that Noah is my little light and I'm so glad we let him shine."