One of our dearest friends, Carl & Whitney DeJohn have been faced with caring for their amazing two year old son (Carl Joseph DeJohn III) whom has a congenital heart defect (Hypoplastic Left Heart Syndrome). CJ was born August 19, 2009 while they were living in Colorado Springs, but these circumstances caused them to move their lives back to Cleveland this past year.
CJ just had his third heart surgery September 2, 2011, just days after his second birthday. While the heart surgery was a success, CJ suffered a stroke and subsequent seizures during his recovery, and is now in intensive therapy to regain movement of the left side of his body and re-learn many of the motor skills he has lost.
Our group of friends has watched from the sidelines for far too long, as Carl and Whitney have been absolute rocks, rising to meet every earth shattering challenge that approaches CJ. As medical bills pile up dating back to CJs birth, and Whitney being the primary care-giver for CJ and unable to work, we are coming together to raise money to alleviate the pressure on these amazing parents.
We felt compelled as friends to do something. Carl and Whitney have been nothing less than stoic throughout this experience, cherish every moment with CJ, and would never ask for anything. CJ is the happiest and sweetest little guy who touches everyones hearts that come in contact with him.
In CJ's Parents Words...
Starting our life together in Colorado Springs, we were excited to welcome what we thought was a perfectly healthy baby boy. All the doctors, tests, and ultrasounds throughout the pregnancy told us that everything looked normal. We had no idea the kind of devastating and life altering changes that were coming. During labor and delivery there was still no indication of any problems. The umbilical cord was wrapped around his neck so they took him to the NICU for just a few tests. Next thing we knew he was being flown to Denver Childrens Hospital and told that our newborn baby, who we hadnt even held yet, had a potentially fatal heart defect called Hypoplastic Left Heart Syndrome (HLHS). We had 2 options, a heart transplant or a series of 3 surgeries over the first few years of his life.
It was decided the best option for CJ was a series of
surgeries called the Norwood Procedure. This meant he would be on the operating
table for his 1st open heart surgery at just 5 days old. He made it
out of surgery and stayed in the hospital for 5 weeks with both of us at his
bedside, not going to work, not living in our home, and not sure if he would
make it to the next surgery or the next day. Between the 1st and the
2nd surgery he developed a bad infection under the incision on his
chest. After multiple trips back and forth to the hospital and concerns of
infection and blood disease, the surgeon took CJ once again to the operating
room to remove one of the stainless steel wires holding his chest closed. This
lead into his 2nd open heart surgery at 5 months old, the Glenn
Procedure, which was successful, with zero complications or infections. He
recovered so nicely from that surgery we were very hopeful for our future.
During this time we discovered that the 7000ft elevation in Colorado would eventually cause problems with CJs development. Up until this point he had been tethered to an oxygen tank, but just like any kid he began tearing the hoses from his face. Thats when we decided to leave the life we built in Colorado and move to Ohio where he would ultimately have a better quality of life at a lower elevation. We left family, friends, jobs, and our home, which we lost in a short-sale, to move in with relatives for 6 months until we could afford to live on our own. That was one of the hardest things weve ever done, but we knew it was all for CJ.
Before we knew it, it was time for CJs 3rd and hopefully final open heart surgery, the Fontan Procedure. We had been told that after this surgery kids with HLHS really take off physically and developmentally, they have more energy and are more medically stable. We were so excited to move on with our lives without another major surgery looming over our 2 year old.
We were not prepared for what happened next: while recovering from this past open heart surgery, CJ had a stroke which manifested into multiple seizures. Weve never felt so helpless, watching your baby seize is something no parent should have to see. As a result of the stroke caused by the surgery CJ was temporarily paralyzed on his left side. We were devastated. We had brought in a running, jumping, high-fiving 2 year old with the expectation that he would be stronger and healthier. Now we were celebrating him squeezing our finger. This is so hard to believe this is happening to us. Nobody wants to be the less than 1% chance complication.
Even though we were completely blindsided by these rare complications, we are very hopeful for a full recovery. Were at Cleveland Clinic Childrens Rehab Hospital five times a week doing intense therapy and we are already seeing progress. CJ is re-learning how to walk and is regaining movement in his left arm and hand. In the future he will have more neurological testing and a life of ongoing cardiac care.
What We Need
Other Ways You Can Help