Ethan and Jarcho Levin Syndrome

Jarcho Levin Syndrome is a condition that most people have never heard of. In fact there are very few doctors who have ever heard of or come in contact with it. It is so rare in fact that when Ethan was born he was counted as one in twenty in the world with this condition. Most who were born with this syndrome do not live to be very old. The condition presents complications in various systems in the body such as the respiratory system, the digestive system the bone and most prominent is the bone structure in the body cavity.



Ethan was born the third child to my son and the fifth grandchild to me. He is now 5-1/2 years old. He is such a precious and very loving child. I wouldn't take anything in this world for my time spent this weekend with this amazing child. He loves to play darts and has a real dart board that scores for him. He is amazingly good. I enjoyed playing darts with him and he won.



Before Ethan was born the doctors had already realized that he was going to be born with some health issues. It was thought at one point that he was a Down Syndrome baby but the doctors still were not sure about all of Ethans problems. Jarcho Levin Syndrome actually affects the same chromosome as in Down Syndrome. When Ethan was born the doctors immediately placed him in the neo-natal intensive care unit.



This was the beginning of Ethans fight. He was immediately placed on oxygen. After a few days Ethan was not keeping any formula down. The digestive system was affected and a feeding tube was placed. When x-rays were taken of his body cavity - it looked like a bowl of broken pretzels. The spine was zig-zag like an "s" shape and the ribs were all contorted and some nubs where a rib was suppose to be. The doctors didn't even have a diagnosis yet. All they seemed to be able to do was research and try to keep Ethan stable.



Ethan ended up spending most of his first year at the University of South Alabama Womens and Childrens hospital. This is a special needs hospital for children and women. By the time Ethan was a year old they had a diagnosis and he had already experienced 6 operations. My son - Jimmy had done a lot of research on his condition and learned what to tell the nurses and doctors to do for him until he finally saw a doctor who had specialized in this particular syndrome. Jimmy found the only doctor in the world who specialized in Ethans condition and that was in San Antonio Texas. By the time Ethan was two they had moved to San Antonio.



The prognosis was that Ethan would undergo rib surgeries where they would insert titanium in his spine and attach to the ribs. This has to be done in order for him to be able to allow his lungs and other organs to grow. He had his first of these operations in October of last year. He grew 3 inches on the operating table. Staph set in and everything had to be removed a week later. He lost the growth and is now waiting on some weight gain in order to proceed with more rib implants. Ethan is still on tube feeding and is amazingly well adjusted to his special needs. What I don't understand is how can he gain extra weight when he doesn't eat. You can't just fill him up on the liquids/solid that he receives through the tube feeding.



I want to share some photos from my weekend with Ethan.



He is a ham for the camera. The hair - well they like it - so I say it's like Samson - maybe he gets his strength from his hair. He has been through more already than most of us will experience in a lifetime. Actually he had had shunts place in his head and screams worse about getting his haircut than seeing the doctors. His scalp is extremely sensitive.



Saturday the 4th was extremely hot. In Marrero Louisiana where they recently moved - the air was stagnate with 100 degree readings. Not a leaf was blowing. Ethan wanted to take a dip. He still wears a diaper. The potting training has not been picked up again since the last surgery. Everytime he has surgery it sets him back on speech and the potting training and they don't press the issue either. There are too many other more important things to consider.


If you enlarge the any of the photos you will be able to see the bones protruding. Here you can see the right breast bone and on the left side was his last surgery. Ethan is about the size of a small 4 year old. The hips are at an angle - this was corrected in the last surgery but was undone due to the infection.

Max - the new black lab likes the water too. Ethan screamed just as I snapped this - he is scared to death of a dog jumping on him. By the way I took Buddy with me and he was the perfect dog to Ethan. Never jumped up on him and layed so still for Ethan to pet him. Progress there.

This is the side where you can see the large scars on his back down the side and also right at the hip.

Please excuse us - you know little ones sometime swim naked when no-one can see them - and there was complete privacy.

Me and Jimmy.

Jimmy and Becky. Yep he married a girl with the same name as mom.

I am a proud mom and grandmother.

Happy Monday to all my fellow bloggers and hope all had a nice holiday.