When the River rises...

Allow me to introduce you to a dear friend, River. River was born with Infantile Scoliosis. This is different than adolescent scoliosis you see in teenagers as treatment is crucial in infants/babies. Here's River's story...

The abnormalities were identified in River's back early, within a couple of months old. Around 5 months old, as he was starting to sit up more, we noticed the uneven shoulders and the slight tilt. River saw his pediatrician and as soon as he walked in and saw River, he knew exactly what he was looking at. He recommended us to a local pediatric orthopedic surgeon who immediately did xrays, confirming River had a 45 degree curve and within a week River began his Mehta Casting Journey at 8 months old.

The casts were worn for 4 weeks at a time, with a week break in between a new one being placed. With this meant xrays every 4 weeks before casting and after. All casting was done under anesthesia which was not covered under insurance and completely out of pocket. The purpose of the cast was to help straighten River's spine as he grew. The goal was to get under 15 degrees and for it to stay there for a particular amount of time before we would be finished casting. Over the next 3 years, River's spine continued to progress. His curvature was moving more and more to the left. When this happens, it starts affecting the internal organs such as the lungs, the heart, can lead to broken ribs with the chance of puncturing nearby organs. In 2015 we were told the casting was no longer working, and that the US had just approved Magec Rods for patients. We were assured River was a great candidate for this, it was less invasive.

This procedure put rods in that could be adjusted by a machine every 3 months that would be placed on the back to adjust the rods inside, without having to do a surgery. It sounded like a great option, and we trusted what we were being told, so in October 2015, a few months after River turned 4, he had Magec Rods placed. It was an 8 hour surgery and a week long hospital stay. He was molded for a brace to wear 3 months post-op. Within a month of the rods being placed, River became very tired and unable to get up and move around like had been the days prior. We took him to Children's and while his incision looked great, nothing to show concern, his blood levels showed an infection was somewhere. An ultrasound was given and it showed a pocket of infection that had grown on the rods.

An emergency surgery for a wound flush was scheduled for the next morning. This required River's back to be completely opened, as opposed to the 2 incisions top and bottom he had from the rod placement. The wound was flushed, the rods were replaced, and a drain was put to rid his body of the toxins. We waited days to see what was going on. He was weak, sick, and we had no answers. We had an amazing team at Cincinnati Childrens Infectious Disease Dept. Within a week he was showing signs of improvement, the infection was Staph, and River was given a PICC line to come home with for 2 weeks.

Recovery was a bit rough, but River pushed through and the infection cleared. The following year he was due for his first lengthening. Beforehand, we noticed a black spot at the top of River's back where the rods were. The hardware had come undone, and was breaking through his skin. Immediate surgery was scheduled the following morning. One of the rods was replaced, and was anchored to the ribs and near the shoulders. We noticed something going on when River couldn't walk much. He was miserable. He went in to see his surgeon and learned his rods had once again, failed. This time breaking atleast 5 of his ribs, and popping through the skin.

By this point, River's back had started to hunch. He was developing Kyphosis. Some know this to be "hunchback". November he was back in getting a "revision", again. We were never aware til after the surgery that this could even happen. In July of 2017, River was back to the hospital, with yet another rod failure. They had once again, broke through. It was at this point, his surgeon decided to remove them altogether. They were doing more harm than good. Between August when they were removed, and November of 2017, River's curvature had increased from 65 degrees, to 92. So back to casting he went.

He has had to date, 41 Mehta Casts, 3 Braces, and 5 major spine surgeries. He has severe kyphosis due to the rod failure, and has developed "Restrictive Lung Disease".

Learning he is no longer a candidate for casting, his surgeon is wanting to move on to another surgery. After our previous experiences with our current team, we have decided to seek another opinion, or 2, or 3, whatever it takes. River has been a tough kid for a long time. He doesn't complain, he doesn't cry about his condition, he takes everything in stride and does his best with the hand he has been dealt.

As we head into the summer when children are playing outside, riding bikes, and playing tag football, River will be located in Lexington, KY for 12-15 weeks enduring a painful procedure called Halo traction. This intense procedure is the last resort to try and straighten his spine enough to qualify for yet another major surgery. During this time, River's mom or dad will be located in Lexington with him and the other left in Ohio to care for their three other children. This unfortunately means there's typically only one steady income and sharing one car to commute between two people and two different work locations, makes it virtually impossible. River's parents are trying to secure a room in the Ronald McDonald House in Lexington so that they can afford to stay with him as much as possible.

The surgery he is facing is not without substantial risks and concerns. The weight of the decisions his parents are facing is unbearable. The surgery can be a huge success or a huge failure. There are so many unknowns.

Your support will go directly to River's family to ensure that the financial burden is lessened by your generosity. It will also be allocated to get their family car much needed maintenance, support with day-to-day expenses and so much more. If by chance you cannot donate and still wish to help, please pray for River's comfort, his care team, and the decisions Amanda and Travis are facing.