Camron Dillingham Story - Part 1

Written by Frank Bentley

Articles - People

This is a story about a wonderful little boy who was born with a heart defect, has endured many operations and medical procedures and has survived to be 14 years old. This is a narrative of his life issues thus for, as told by his grandmother, who has been Camron’s primary caretaker since he was six months old. Part II -The Human Side will be published in the next issue and will include interviews with Camron’s parents, sister, grandparents, teachers, doctors, and those that know and love him.

Camron Hawke Dillingham was born July 30, 1995 at Medical City Dallas. Within a short time he started to turn blue. He was put on oxygen and tests revealed a Double Outlet Right Ventricle, D-Transposition of the great arteries, atrial and ventricular septal defects, and pulmonary atresia. Blood to and from the lungs stayed mixed creating an abnormally low oxygen saturation. A Blalock-Taussig shunt was inserted to help circulation. After two weeks he was allowed to go home with oxygen.

Since Camron’s immune system was compromised, he developes congestion and pneumonia easily. He was soon diagnosed with RAD, reactive airway disease, and put on breathing treatments and meds for congestion.

In early 1997 he was sent to Houston to undergo Balloon Surgery to enlarge ventricular narrowing. The heart shut down and the hole in the atrial septum was made larger instead. About two months later another Blalock-Taussig shunt was inserted to further help circulation. In the fall and winter he continued to have problems with asthma triggers and congestion. He was on and off oxygen depending on his O2 level.

He did pretty well the first several months of 1998. The first week of November he had surgery to clip the piece of skin under his tongue as a remedy for being tongue tied. Instead the doctor cut underneath his tongue about ½ inch and from across one side to the other. His tongue quickly swelled cutting off oxygen. He had to be intubated, a tube down his windpipe to keep him from dying from lack of oxygen. He was in PICU over a month sedated where he could not move. His tongue was so swollen that it was out of his mouth an inch and his teeth were biting it keeping the swelling from going down. He had a block built in his mouth on one side as a surgical procedure to keep his mouth open. He was sent home with an NG feeding tube down his nose into his stomach for a month. PediaSure was his nutrition. After about five weeks the swelling went down and the block was removed as well as the feeding tube. This was now January of 1999.

In March he was given a heart cath, and from that test he was scheduled for corrective heart surgery in April. A Rastelli operation was performed. A homograph was used from the right ventricle to the pulmonary arteries. He developed heart block, and a pacemaker was inserted just below the middle of the rib cage. He did really well through everything.

Fall and winter brought some of the usual asthma problems. Temperature changes during this time of the year are hard on him.

In the spring of 2000 he did pretty well. In June he had his first small seizure with others to follow. He went to a neurologist, and tests were done to see where the seizure activity was originating. His diagnosis was a defect in the left parietal lobe of the brain. He was put on Tegratol which worked well for a while; then he had a reaction to it. Dilantin was prescribed, and he had another reaction. Depakote has now kept him under control for almost eight years.

In the fall of 2001 Camron started school. He was in CBI class for special needs children. Since he didn’t talk to communicate, he had his own way of making sounds and signs for what he wanted at home. A picture program and signing became his way of communicating at school, and he signs a lot at home.

Around November the pacemaker became weak and needed to be replaced. The surgery went great, but the incision wasn’t healing like it should. His symptoms were showing signs of infection. He was hospitalized and was found to have Endocarditis. A glob of infection was floating in his heart attached by a thread like substance. The pacemaker was removed and he was on powerful IV antibiotics for several weeks while in the hospital. A temporary pacemaker was being used outside of his body until a new one was placed on the left side just below the ribs. He was then sent home on intravenous antibiotics for a few more weeks. It was now about March 2003, and he was doing much better. The year ended with usual fall illnesses.

His health was pretty good in 2004. He enjoyed school and was progressing nicely.

In early 2005, his pacemaker transmission showed the pacemaker wasn’t working properly. The leads had broken. In April again a new pacemaker was inserted. This time in the upper left shoulder. The next day the left arm had swollen. The leads had closed the blood vessel they were in, making the body open new pathways for the blood to flow. (Amazing how our body knows what to do to correct itself.) The swelling went down and all was well.

In October he had surgery to realign his left ankle and foot. It twisted in a fall near the front door at home. The ankle was in a cast and braced for several weeks. That surgery was a success.

During 2006 he loved school and was progressing well. There were no surgeries, just the usual fall and winter illnesses. The summers are usually his easiest time of the year.

In March 2007 Camron was diagnosed with Hypothyroidism and put on medication to correct that.

He has had some issues with his stomach and reflux but nothing major.

2008 was uneventful with just the usual illnesses.

In early 2009, he had pneumonia but didn’t need hospitalization. Camron can’t be outside so he misses out on Vitamin D from the sun. His Vitamin D was checked along with other blood work, and it was found to be very low. X-rays also showed he has Osteopena. He was started on supplemental calcium and D-3 along with other supplemental nutrition. March 30th he had a scheduled cardiology appointment. His heart was good, but petechiae on his legs and feet was getting worse than the normal amount he had for years. The doctor stopped his aspirin and ordered blood work and a blood culture. The culture came back positive for a rare bug. He was hospitalized and cultured for several days. The doctors decided it wasn’t anything harmful to Camron, and he was released.

Two weeks later he was hospitalized for six days with pneumonia and released.

The last week of school he had an episode where his color changed, he threw up, and his O2 was lower than normal. An ambulance was called to the school. His blood pressure was taken and was very low also. By the time he got to the hospital he was back to normal. He was evaluated and watched for a few hours and was sent home. On June 2nd we saw his cardiologist to review his heart for a possible cause. His heart was fine.

He continued to have congestion off and on into July. The end of August he looked swollen, was gagging, and his stomach looked bloated. His PCP ordered blood work and chest x-rays – my gut said congestive heart failure. Another visit to PCP and calls to his cardiologist sent us to the ER. His symptoms all led to congestive heart failure. He was admitted and started on heart medications. His Echo showed an 8% fractioning of the left ventricle. Within the past five months, it has been up to19%, down to 16% and back up to 17% on January 18, 2010. The cause seems to be secondary to chronic pacing. The prognosis is that it will get worse, with the time line unknown.

Through all of this Camron has remained happy and loving. He immediately displays that beautiful infectious smile he has had since birth. If his red hair doesn’t grab you, that smile will. He waves at people everywhere we go as if to say “Hi, I’m Camron, look at me!”

Now he is home bound and only goes to doctor appointments. He has homebound schools services and really enjoys those.

His heart specialist has suggested calling the “Make a Wish Foundation” so that Camron can enjoy something special while he is still feeling good.