Nick’s Story

Nick was born in Las Vegas in the fall of 2000.  The pregnancy was without incident, until the time of delivery.  My OB had decided Nick was too big, his head was in the right spot, and he was ready to come out.  She (my Dr.) wanted to induce labor, so we showed up at the hospital as scheduled.  Once we got there though, the nurses made no secret of the fact that they disagreed with my OB, who was not present.  They said I wasn’t ready, the baby wasn’t too big, and that I shouldn’t be there.  After waiting all day for something to happen, a nurse came in, checked me and said, the reason Nick wasn’t coming out, was because he was folded in half, trying to come out bottom first.   Another Dr. came in and tried to turn Nick around with his hands, from the outside twice, and from the inside once.  It didn’t work, so I had a c-section.

When Nick was 2 months old I noticed a small curve in his spine.  I showed it to his pediatrician, who said it was very small, and since Nick was a baby, there was nothing to be done.  He also said he thought he heard a murmur, but wasn’t sure enough to pursue it.  He told me not to worry about it.  Since Nick was our first child, and I was a first time Mom, I was relieved to be told “don’t worry about it.”    In addition, I had been diagnosed with scoliosis at the age of 12, and my mother was told not to worry about it.  My Dr. said the curve was slight, and that I should stand up straight from then on, and that was the end of it.  I had no idea that his curve would progress.  I knew nothing about scoliosis, and didn’t think I needed to research it.

Meanwhile, each time Nick had a well baby check, the Dr. was still on the fence about the murmur, and still took the same stance on the scoliosis, although I was convinced it was getting worse.  A few months after Nick turned 1 year old, we moved to California.  I found a new pediatrician, and on his first visit, asked him to look at Nicks’ back and asked if he heard a murmur.  He said he heard the murmur, and also was very concerned about the scoliosis.  He recommended we see a heart specialist first, and then deal with the spine later.  The cardiologist diagnosed Patent Ductus Arteriosis, which has since seemed to resolve itself.  We were told by another cardiologist, that “Nicks’ heart is fine, it just works funny because of the scoliosis.”  It doesn’t sound right, even though it is working right.

Once everyone was comfortable that Nicks’ heart wasn’t in danger, we were referred to an orthopedic surgeon for the scoliosis.  That surgeon immediately contacted Shriners representatives, and got us ready to go to a hospital in our state.  Our first visit to the hospital resulted in the following news being told to us:  the scoliosis is very bad, the only option you have is to schedule growth rod surgery today, and he will have surgery every 3 months until he’s grown.  If you don’t have the surgery, he will end up in a wheelchair, unable to breathe, and eventually die.  This news was completely devastating to our family.  Not having done any research, we had no way of knowing this information was wrong.

After 2 weeks of despair, I decided to refuse to accept that growth rod surgery was the only way.  I spent every waking moment for a month, researching.  I looked for anything and everything about scoliosis, growth rods, braces, syndromes, etc.  I came upon the ISOP site for parents of kids in plaster casts, but was so confused, and thought it sounded too simple, too bizarre too work, so I saved the site, and moved on.  After another month of searching, and finding nothing that gave me any hope, I went back to the CAST Support Group site and dove in.  The more I read, the more I understood.  The more I understood, the better I felt.  All of a sudden, we had a choice!   I gathered as much information as I could and took it with me to our next appointment at the hospital.  The surgeon there refused to discuss casting, refused to watch “A New Direction”, 20 minute video, and insisted I  schedule the surgery.  When I still refused, and said I would need another opinion, he told us to come back in a few months and participate in a conference, where 30 or 40 other Dr.’s would look at Nicks’ case and give us another opinion.  We were thrilled with that, although, when the time came, I was given about 2 minutes to state my case, and we were ushered out the door.  A Dr. came out about 2 hours later and said they all agreed with me that Nicks’ body type wouldn’t tolerate growth rods, and they wanted to put him in a TLSO brace.  I asked him if they would please consider plaster casting, and he said no, they don’t do that there, they aren’t trained for it, and he’d never heard of early treatment for Nicks condition.  At that point I said, thanks for everything, but we’ll be going to Salt Lake City Shriners hospital in 2 months for their opinion, and hopefully from now on.

When we got to Shriners Hospital Intermountain, it was like a whole other planet.  It was like all the months before I was speaking another language and no one understood me, and then, we got to Shriners in Salt Lake City, and everyone understood everything!  Even though we were still scared to death for our son, we felt so relieved.  We felt like we were finally in the right place.  At the hospital in California, I had asked our first surgeon what his thoughts were on Marfans syndrome, thinking that my son exhibited some of the traits, and he told me that I didn’t want to go down that road, and that in the end, the geneticist would tell me the same thing he told me, to go for the surgery.  I mention this because the first day we met the team at Shriners Intermountain, within 20 minutes, one of the Dr.’s asked me if I had had Nick tested for Marfans.

When Nick first started treatment at Shriners Intermountain, in March of 2005, his upper curve was over 65 degrees, his lower curve above 30 degrees, and he had some rotation of the spine.  As of March 2006, his upper curve was reduced by about half, the lower by a few degrees, and the rotation is gone!  Of course having a child in a series of plaster casts isn’t always sunshine and roses, but compared to the alternative, it’s a miracle for us.  Nicks’ quality of life is so much better in a cast than it would have been if he’d had 4 or 5 surgeries with growth rods by now.  I think about where Nick would be, physically and emotionally, if we had listened to that first surgeon, and I feel sick to my stomach.  And then I thank God for finding the ISOP group, and Shriners Intermountain. We have avoided surgery for the time being, and his scoliosis has improved!  I only wish we would have known to address the scoliosis when he was a baby, and to have him treated early with plaster casting then,  I believe his spine would be straight by now, had we known about the early treatment casting process.