When Nicky was 5 months old, my husband and I noticed that he had a bump on his back, so we took him to our family doctor. Our doctor suspected scoliosis, even though he said it was quite rare in such a young child, and sent us to a Pediatric Orthopedic Surgeon for a diagnoses. At 8 months old, Nicky was diagnosed with Infantile Idiopathic Scoliosis with a curve of 48 degrees. He was casted for a T.L.S.O. brace, which he started wearing when he was 10 months old.

Nicky was supposed to wear his brace for 23 hours a day! Easier said than done!! First of all, every time he had something to eat while his brace was on, he would vomit everything up. So, we had to take his brace off whenever he ate (and for anyone who doesn't know, 10 month olds eat alot more than three times a day), and keep it off for at least 1/2 hour. Also, everytime he needed his diaper changed (all the time) his brace had to come off, and be put back on. To make a long story short, he didn't wear his brace for 23 hours a day, but he wore it as much as possible, under the circumstances.

As Nicky got a little older, he started to get sick alot. Lots of "viral" infections with high fevers, ect. Mostly involving his lungs to some extent, bringing his oxygen saturations down. He was in I.C.U. with severe croup, and hospitalized. It was very difficult to keep his brace on with all these illnesses, and he would sometimes be out of his brace for weeks at a time.

Now Nicky is 2 1/2 years old and on his third brace. He REALLY hates it! He cries, screams, and fights me with every ounce of his strength, when I put it on him! Then, when it is on, he complains and cries constantly about it. I know that it fits him O.K. becuase he has a great orthotist, who has done everyhing in her power to make it more comfortable for him, and he doesn't really get any red spots. It's very difficult, as a mother, to make him wear the brace when it makes him so miserable, but I have to do what's best for my son. I guess some kids adapt to the brace better than others.

Last month, Nicky's doctor decided that he needs to have surgery because his curve is now at 75 degrees. Nicky was also diagnosed with asthma, and is being treated for it. I'm not sure what the surgery is called, but it involves a "growth rod" and no fusion. He will have to have surgery every six months or so, to expand the rod. This will go on for as long as he is growing, at which point he will need to have fusion surgery.

This is all very scary for myself and my husband. We just want to do the right thing for Nicky! We are hoping to take him to another doctor, for a second opinion, before he get's booked for the surgery. Nicky has actually seen two doctors in our city, and one of them has shared Nicky's medical records with two other doctors in the U.S.A.(we live in Canada) All the doctors so far are recommending the surgery. We have a appointment later this week, regarding the surgery, so I will update this story when we find out more.

Update - May 14, 2004
We took Nicky to see his two sugeons ( they work together on Nicky's case) on May 13th. Nicky's curve has progressed to 80 degrees, and they have decided to do the Titanium Rib surgery on him. They have tentatively booked his surgery for June 16th - Yikes... not very long to prepare! Nicky will have to have quite a few tests before his surgery; cardio, renal ultrasound, pulmonary, CT scan, appt. with anesthesia - these are the ones that I know about so far.

Update - July 13, 2004
Nicky had his Titanium Rib or VEPTR surgery on June 21st. His surgery took 3 hours and involved placing an expandable rod(or rib) from his spine, to one of his ribs. His surgery went great! He was already extubated when he went into recovery, and he didn't even have to go into ICU, but went straight into a regular room. With the exception of a few problems with his medications, he did really well, and was released 5 days after his surgery. When he came home from the hospital, he was just on Tylenol for pain, and already walking and playing(somewhat slowly). Now, at 3 weeks post-op, he is pretty much back to his normal, non-stop activity level, and only has Tylenol at bedtime! His recovery has been amazingly fast!

His surgery was a great success! Usually with an initial implant the surgeons don't really try to get too much correction, they just want to get the rod implanted well. They found that Nicky's spine was really flexible, so they got better results than they expected. His curve went down from 80* to 40* and they got about 50% de-rotation, which means that his rib hump(which was quite bad) is almost gone.

This is just the begining of a long road for our little Nicky, but hopefully we will be able to keep his lungs growing normaly, by expanding his chest cavity, until he is done growing. There will be many(probably at least 20) surgeries, in Nicky's future,but we hope and pray that they will all go as well as this one did! Thanks for reading Nicky's story! If you have any questions, comments, or suggestions, please post a message to me here on SpineKIDS.com (username "nicky's mom"). Thanks!

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