Antonio was born on December 6,1998. As soon as he was born, he didn’t look quite right so the doctors were rushed in and he was put in the NICU.
After days of testing he was finally clinically diagnosed wit Marfan’s syndrome. We were told that there would be heart, lens, joints, muscle and spinal complications to look out for in the near future.
Although, the diagnosis was wrong, he did end up getting scoliosis at 6 months of age. His over all diagnosis has not ever been found but we do know that it is some kind of connective tissue disorder. He has many symptoms of his condition but I will fill you in on the scoliosis journey. It has been the most difficult and longest, most painful part of his life and I include heart surgery as a far second.
Since Antonio has very loose joints and extremely low muscle tone and does not walk, his scoliosis progressed quickly and with a vengeance. At the time, 1999, we were told to brace him. Didn’t help. 6 months later his curve went from 30 degrees to 45 degrees. Then we were told that he would outgrow it….Three months later it was at 65 degrees.
Antonio is granted a wish by the Make A Wish Foundation to meet The Black Eyed Peas.
We changed doctors and he was put in a brace that he wore day and night with the hopes that the curve would hold and not get worse. He was braced until he was 7 years old when we decided that growth rods was our only choice. I fought to get him the VEPTR rods because they are a less invasive choice and his surgeon finally agreed However, he was put in halo traction first to get as much correction as we could before surgery. He stayed in halo traction for a whole year because we kept seeing improvement in the curve every time we went for an x-ray. He went to school with his halo traction and did everything while in traction. He was so comfortable because he didn’t have gravity holding him down and putting pressure on his spine. So then at eight years old the VEPTRs were implanted from his top rib to his pelvis.
Six months after the VEPTERs were implanted, his expansion surgery came next. Right after surgery we realized that his pelvis had been cracked by the pressure of the rods so one of the rods was removed. A few months later, his other rod migrated right through his rib and that one had to be removed as well. Antonio’s bones were much to soft to hold the rods and unfortunately we didn’t realize this until it was too late.
So, back to square one. He went back in a brace for several years and when he was 11 he went back in halo traction to prepare him for spinal fusion. At this point his curve was 106 degrees. He remained in halo traction for another year. I wanted to wait as long as possible so he could get as much growing time as he could. Again, Halo traction was his best friend and he was so incredibly comfortable. His curve went from 106 degrees to 45 degrees with traction.
At twelve years old he had his spinal fusion. It was a fourteen hour surgery . he spent the following 6 days on a ventilator and finally came off the vent and started the recovery process. Shortly after, he developed an infection and was put on a wound vac. A wound vac is where they fill the open wound with a special sponge and attach the sponge to a vacuum system that allows all the drainage to get sucked out of the wound and promote quicker healing. Every three days he was sent back to the O.R. where the sponge was taken out and replaced. It was a long horrible process that left him in the hospital all summer long.
Once we were done, we were sent home with a small wound that continued to drain for a whole year. He would not heal until the rods were removed from his spine but we needed time to allow his fusion to hold. After a year of keeping the wound issue at bay we went back to the O.R. to remove the rods. Again his infection returned and a new wound vac kept him the hospital for a whole other summer.
Once we finally closed up the wound and returned home he began to drain out of the same spot AGAIN!! We tried to heal it with help of antibiotics and wound care specialists but the following summer he was back in the O.R. to have another surgery to clean out the wound. Guess who came back? INFECTION…another wound vac and another summer in the hospital. Once that was finally over, the wound has been dry and closed and drama free.
We are still scared that the curve might come back because we had to remove the hardware that was keeping his spine in place However, I don’t see us going to the O.R anytime soon to put them back in.
Antonio’s scoliosis surgery has been a total nightmare. He was born too soon to benefit from the life saving Mehta Casting and it makes me so sad to think what if all these surgeries could have been avoided? At any rate, Antonio’s scoliosis journey is finally over (hopefully) but one thing about him is that he NEVER let any of this stuff get him down. He is an amazing boy with a great gift of positivity, patients and love.