Our Daughter, Joy 

by Steve and Hope Baker  

    Here is a story of God’s grace and sovereignty in regards to our daughter Joy, diagnosed with Spina Bifida.

    Our daughter, Joy Faith, was born on July 8, 2005 with Spina Bifida. She has been an absolute, wonderful blessing and miracle.  People comment all the time that her name is so true of her personality.  She is a Joy.

 Joy is our 6th child.  We found out when I was about 22 weeks pregnant, by routine sonogram, that she had spina bifida.  I remember when the doctor told us, we really did not know what it was.  Our doctor made an appointment for us to see a specialist and get a level 2 sonogram.  The soonest appointment that we could get was 2 weeks away.  It was a long 2 weeks.  I remember going home from the doctors’ appointment all I was hearing in my mind was the words “Spina Bifida”.  I woke up in the middle of the night with the words “Spina Bifida” being repeated in my mind over and over again.  The next day my husband and I did some research on the internet.   We found that there was a wide range of possible disabilities.  The best case was that she would walk with some braces; the worst case was she would not walk and be wheelchair bound.  Most websites indicated that hydrocephalus is almost always present.  Club feet are a possibility.  There were even a few websites that said 25% of babies die by age 5.  It was very frightening information.  The prognosis depended on the level in the spine that the opening was at.  We would have to wait 2 weeks to find out anything.  Well, finally we had the level 2 sonogram.  Her level was S1 – L5.  They told us that it was low on her spine, which was good.   The doctors were puzzled that she did not have the Chiarimalformation in the brain, there was no hydrocephalus, no club feet.  She did have a mylomeningecele, spina bifida.  They told us the best case was she would need bracing to walk and hydrocephalus would probably show up at some point in our pregnancy and club feet could as well.  They scheduled us for monthly sonograms and even a sonogram of her heart.  Everything remained the same.  There was no hydrocephalus, no club feet.

We decided on a name for her so that we and others could pray specifically for her.  Her name is Joy Faith.  We chose Joy because we were joyful to be blessed with her and to keep her; Faith because we trusted God to watch over her.  Her name is so fitting.  Joy was born naturally (no c-section) on July 8, 2005.  She had a bubble on her back; her spinal cord was exposed but covered.  The surgeons operated on her a few hours later.  The neurosurgeon was very hopeful.  He said she did well in surgery, her spinal cord was out a bit but it did not look too bad.  She spent only 6 days in the NICU.  That is apparently a short time for a spina bifida baby.  It was not an easy experience but God is good and we had peace through it.  Joy had a few issues with reflux to her kidney when she was discharged.  At that time she was prescribed an antibiotic to take daily.  We also had to catheterize her once a day.  This was hard to get used to, but after a few weeks it was pretty routine.  She had several specialist appointments her first year.  At her 1 year checkup we learned that the reflux in her kidney was better, but her bladder was not working well.   It had not grown at all since she was born.  The doctor said she would need to be catheterized every 3 hours as well as taking another medication 4 times a day.  This really was a big adjustment.  It took us a little longer to get used to this but realizing what could have been, we were very thankful that Joy is so healthy.  God has truly worked a miracle in Joy’s life.  Through this experience I have learned to take one day at a time.  My husband and I have always had a great relationship but through this experience we have grown closer.  When I was pregnant with Joy we committed to pray together every Sunday evening.  We would pray for Joy, our other children, each other and Gods strength.  We still do this every Sunday evening.  I love that God is strong when we are weak.

 Joy is now 18 months old.  She is so funny.  I have heard people say many, many times that she is a true joy (of course, we feel that way!).  She is daddy’s little girl and Gram-ma’s favorite.  She never developed hydrocephalus.  She is very smart/sharp.  She runs, jumps and dances.  She has none of the disabilities that ‘should have been’.  Nothing like what we really thought or told could happen.  If you met her and did not know she had spina bifida you would not suspect it.

Joy is truly a best case scenario health wise for spina bifida.  There is a wide range of possibilities, but I was not told by doctors that it would be this good.  Actually they portrayed a very bleak picture and continually pushed for abortion, even after we told them that there was no chance we would do that.  God has blessed us with 7 children.  From my experience, I must say that even though our children are healthy, there is no such thing as perfect.  Every child has special needs; each one requires different attention.  We have no guarantees that one of our healthy children will not require special help at sometime in their life.  We have no guarantees of health or even life.  God promises, if we know him and walk with him, he will not put more on us than we can bear.  What God creates is not by mistake.  I believe God’s intention is blessing not burden.

 To contact Steve and Hope, e-mail them at: info@advantagetelecominc.com