This is the story of Kaleb Anthony. My handsome, loving 10 year old son. Kaleb is a green belt in Judo, plays paintball, is in drama and chorus at school, involved in his Community Center basketball league, an honor student, as well as a great volunteer for many organizations. He was one of the top nominees for Military Child of the Year 2011, as well as an intricate part in organizing a toiletry drive at his grandma's church to send care packages to soldiers. Kaleb sold several tickets during his summer breaks for Boatsie's Boxes...an organization that supports the troops. He is an old soul. Wise beyond his years. His father is currently serving in Afghanistan. This is his third deployment in the last five years. I would not get through these times without him. He is an awesome big brother to his two siblings, a tremendous help around the house, and even on the darkest days he knows how to make me laugh. Kaleb never complains, he never asks to be put first.
Everyone that meets Kaleb tells me how well mannered and sweet he is....how he is a joy to be around. Most people would never know that he isn't supposed to be here. When I was 6 1/2 months pregnant, I went in for my first ultrasound. My pregnancy seemed normal, so because we lived in a small rural town the doctor did not see it necessary to perform one before that time. We were beyond excited to meet our little person. I remember her showing us his face, and then asking next if we wanted to know the sex. When my husband heard that we were having a boy, he let out a yelp...and just beamed from ear to ear. As the ultrasound proceeded however, the look on the tech's face went from joy to terror. I remember the moment she knew something was wrong...and told us she needed to get the doctor. Nothing was said, but I just knew. As the doctor came in and looked at the screen, he then proceeded to tell me that my son had what they called a "double bubble". He had several blockages in his intestines, and they could see several abnormalities in his heart. They said that it looked like Kaleb has just stopped developing. The doctor also mentioned that Kaleb having this many anomalies would probably have some sort of mental retardation as well. We then were told that our best bet would be to just end the pregnancy that day because even if I did deliver Kaleb, he would be still born. Devastated and completely numb, we left the office. As we drove home I made it very clear to my husband that I would not terminate the pregnancy. We would just wait, wait to feel our babies kicks stop. So many questions went through my mind. What had I done wrong? Did I eat the wrong things, was it because I was only 18? Why was OUR baby sick? As the weeks went on my husband decided that we needed to be home for the holidays and surround ourselves with family. Despite having heavy bleeding only days before, the doctor cleared me to go, knowing that their was nothing he could do to help. As we reached my mother in laws house after an 8 hour drive, I became very swollen, very quickly. Then, I noticed that I had excruciating gas pains. However, this was not gas....I was in labor. By the time we got to the hospital, I was five cm dilated and their was no stopping the labor. Within 4 hours, on December 28,2000, I gave birth to my beautiful 3 lb 5.6 oz miracle. He came out crying, and despite only being given two hours to live, the moment I heard that cry, I knew he was a fighter. After the two hours passed, a decision was then made to life flight Kaleb to Kosair Children's hospital in KY to better manage his last hours. We were living in Kentucky at the time so they thought it would be easier for us to be near him there rather than stay in West Virginia. After the next couple of hours passed, I was given a call that they wanted to perform colostomy surgery on Kaleb. They were only giving him a couple of weeks to live, but wanted to manage his care as well as they could in that time. After the double barrel colostomy was performed, Kaleb had a rough touch and go month. He had a colostomy revision at three weeks old. Surprisingly however, at 1 1/2 months old he went home. I was scared to death. The next couple of months were so hard. We had to learn colostomy care as well as how to deal with a "blue" baby. Kaleb was diagnosed with duodenal and anal atresia with an imperforate anus secondary to an annular pancreas, as well as tetralogy of fallot on top of many other problems. At eight months old Kaleb had several days where he turned blue with no relief. After a heart cath they said they weren't aware that his heart was as bad as it was. He had his first open heart surgery within 24 hours. Followed by another one at age two. Kaleb endured several more procedures over the years for his other problems. In the end of 2007 I noticed that my energetic little boy was getting winded and sleeping constantly. He also was suffering from migraines. After several trips to the hospital, and testing, and begging and pleading they finally agreed that a heart cath should be done. On June 17, 2008 and I kissed Kaleb good bye as they wheeled him down the hall for his third heart cath. Not really overly worried bc he had endured so many other major surgeries and two prior heart caths. Within an hour I was called to come to intensive care. Kaleb was not tolerating the intubation and the cath was called off. They needed me to help wake him up. Amongst the chaos that was taking place in the ICU and not realizing I was Kaleb's mother, they buzzed me back. I walked in to see them resuscitating my beautiful little boy. As an EMT, I had performed CPR and used a crash cart several times. Never would I wish anyone to see their child having this done. I watched my baby die that day. He had gone into respiratory arrest. They revived him however we were told that Kaleb was very sick and probably wouldn't make it. We later found out that he had had a pulmonary hemorrhage. The anesthesiologist had hit something by mistake and Kaleb had drown on his own blood. After two weeks on a vent, he finally was able to be extubated. We took him home shortly after on oxygen. For obvious reasons, we refused to take him back to that hospital and were hooked up with Dr. Pearl in Phoenix, AZ. After a heart cath in October 2008, Kaleb had his third open heart surgery in February 2009. He had a pulmonary valve replacement followed by an emergency fourth open heart surgery 72 hours later. His heart was not tolerating the new valve and he was also bleeding out. He has since endured a colostomy closure and his second anal plasty as well as smaller procedures for things like testicular torsion. We are currently working on bowel management since he has yet to have much control. Kaleb's left ventricle and atrium are extremely enlarged and his heart is very tired. His cardiologist is hoping to wait a couple more years to place a pace maker, however, living in Colorado's famous altitude has presented some problems for him. We've made several trips to the ER bc his pulse and bp were extremely low. We have also been told that Kaleb may need a heart replacement in adulthood. Despite 14 surgeries and always having the odds stacked against him, he's here, and he's mine. Words cannot express how proud I am of him. My days can be hard. My husband is my best friend and is often gone while I'm left to deal with things like surgeries and disappointing doctor's appointments, however we get through it. Kaleb LOVES life. He lives everyday like it's his last. Unfortunately no one can tell me how old Kaleb will live to be. It doesn't matter though. I cherish him now. I cherish all his accomplishments and all the lives he has touched. He was put on this earth to help others...and whether it's through his volunteer work or helping others by telling his story, he's going to change the world someday. He may be small for his age, but he has such a huge heart. He's a fighter!