The last 5 years

I was 20 weeks pregnant and Joey and I were ecstatic to learn at our 20 week ultrasound that we were having a boy (Tyler).  He was our first child and we couldn't have been happier, but that happiness quickly turned into worry.  As the ultrasound progressed I knew something was wrong.  The technician repeatedly viewed his spine and then told us that she was going to grab the doctor to look as well.  She returned with the doctor who also spent a lot of time looking at the baby's spinal region, but they did not say anything.  I remember just lying there watching the screen and knowing in my heart that something was not right.  When they finished the ultrasound they simply said that my O.B. would review the results with us upstairs.  As the elevator doors closed I told Joey "Something is wrong.  I don't know what, but something is wrong." 

We waited for what seemed like forever before getting into the exam room and still longer to see my doctor.  But when I asked her about the results of the ultrasound, she looked dumbfounded.  She had not heard anything about it, but quickly left the exam room to find out.  When she returned to the room she explained to us that our baby had a spinal abnormality called Congenital Scoliosis.  I didn't really have any idea what that would mean for him or us, but I burst into tears.  She quickly set us up with several appointments in Seattle at the UW Medical Center.

The day was heartbreaking.  We were so scared, not knowing much about scoliosis we went to the Internet.  Bad idea.  The Internet has so much information, from so many sources.  We just ended up more confused and scared.  Congenital Scoliosis is rarely discovered in utero which made it even more difficult to find information. 

We learned the next day at the UW that Tyler had a significant curve due to several hemivertebrae, half vertebrae that are shaped like triangles instead of rectangles.  Vertebrae are supposed to be shaped like rectangles that are stacked on top of each other to create a straight spine.  However, when some are shaped like triangles, that creates a curved spine. The specialists told us that Tyler would most likely need to have surgery after he was born.  We were crushed.  The last thing expectant parents want to hear is that their baby has a birth defect that will need surgery.  Then we were set up with an appointment to see Dr. Song, an orthopedic surgeon at Seattle Children's hospital.  He looked at the ultrasounds and told us something that surprised us both.  Dr. Song said that Tyler would not need surgery immediately, and that we would just monitor him with x-rays every 6 months. 

So that is exactly what we have done for the last 5 years, starting when Tyler was 2 months old.  Tyler was born a healthy and very active little boy.  He has a kind heart and an inquisitive mind, and a body that is constantly in motion.  You wouldn't know that he has congenital scoliosis if you saw him playing.  He keeps up and often surpasses his peers in his physical abilities.  Tyler never walks if he can run, will climb over rather than go around and keeps on going through bumps and scrapes.  Often at his 6 month checks I was asked by various resident doctors, who would pop in before Dr. Song, if Tyler could keep up with his peers.  They said it with such concern and even would ask again when I said "yes" as if they could not believe that it could be true.  Usually Tyler proved the point quickly by scaling the exam table then jumping around to show off. 



Tyler loves to run.  He is flying his airplane here the day after his 5th birthday this July





Well, this is enough for one post.  I will bring you up to present in the coming posts.  Thank you for reading, we hope Tyler's story will be helpful to families with kids just like him.