Simon’s Story

“Simon is everything I never knew I always wanted.”

Simon Dodart, Trisomy 11Q Monosomy 20P, 6/19/2005,  North Ogden , UT

Simon-musicEdited 3/24/2015:  Simon was born on Father’s Day June 19, 2005. I had a midwife this time so the delivery was the best I’ve ever had. I was able to try to feed him and let him spend time with us. We spent maybe 30 minutes after delivery together. Then they took me to my room and Dave and Simon headed to the nursery. I was eating my sandwich when the on-call Pediatrician came in and said that they went to take Simon’s temperature and he had no anus. They were not equipped to do that surgery so he will be sent to Primary Children’s Medical

Simon Dodart-Fall-2012Center in the morning and they have to pump his stomach. As far as they could tell his kidneys looked iffy, which is common with Imperforate Anus. So they came and wheeled me to the NICU so I could say goodbye one last time before they closed up for the night and Simon was sent to the other hospital. That was one of the first precious moments I would have with Simon. He looked at me so intently and there was such a spiritual connection it was a beautiful moment with my son. I am convinced he knew that he had to get a good look and that his challenges were about to start. Like he wanted to soak in the moment and the sights and savor them.

The next morning I asked my midwife to spring me from the hospital though I was not able to walk well. Simon had surgery at less than 24 hrs old. It was the best case scenario for a pull-thru and his new bum worked well immediately. Once he was able to release, his kidneys also started functioning just fine and we were happy. He would be home in 3 days.

Wow. So Dave and I decided we were going to leave together (we just never left Simon’s side) and get a shower and pack a bag. On the way home, which was about an hour away, we got a phone call from the hospital telling us Simon is choking when he eats and they had to suction his food out. We took the fastest showers of our lives, threw stuff in a bag and headed back. Simon was evaluated by an speech therapist and had an x-ray. He had an esophageal stricture.. Surgery number 2 was scheduled. Not even 2 days old yet……So an associate of his surgeon came in to explain the procedure and steps needed, ending with pulling his chest apart to get to the esophagus. Needless to say, I was hoping to not have that option used. We waited anxiously in the waiting room and his surgeon said he had left to go schedule the more invasive surgery (chest spreading option) came back and the radiologist had the balloon down and he is open up 6cm. The absolute best case scenario. An NG tube was placed and Simon could receive food. If he pulled out his NG we would have to go to emergency and have the radiologist replace it. Luckily he waited a few weeks for us to settle down before doing that to us! The late night of July 3rd. We spent his first 4th of July in the hospital. I took pictures in his special “I am a firework” outfit later.

On June 27th we were able to take our little Simon home. All the while being told he’s done and he should pretty much have a normal life after his NG was removed. We were terrified of our little boy. We were so afraid of hurting him or pulling out his NG; but got into a routine and began to live our lives. One day while changing Simon’s diaper I saw this HUGE lump in his scrotum area. I called his pediatrician who had me come in to confirm an inguinal hernia. *sigh* surgery #3. Little did I know we’d be counting up to 14 by the time he was 5 years old and we’re over 20 now at age 9. By this point I was scrutinizing every part of his body wanting to avoid these surprise issues. But really trying to be hopeful that we were indeed done with surgeons after this one more surgery. All told he was born with an imperforate anus, ASD, PDA, esophageal stricture, bi-lateral inguinal hernias, sub-mucous cleft palate, hypotonia, strabismus, reflux, sleep apnea, epilepsy, metabolic/GI issues, CP and hearing and vision loss etc. He is also G-tube fed, and lets face it; probably the best smile known to man 😉

Simon had his four month check up and his pediatrician was doing a few tests with his body. Then asked me if we had been referred to Early Intervention and/or Genetics. He began to tell me how Simon had low muscle tone, Plagiocephaly and possibly terc—whatever its called; tight neck muscles. His eyes were also crossed and he was concerned there was a genetic issue. I had no clue there were genetic issues other than your top 3 so I didn’t hurry to genetics. We instead had his eye surgery done at a regular hospital; big mistake. They were afraid of him and were not afraid to say it. I then filled out the information for genetics. I heard that they wouldn’t even call if they didn’t think there was a genetic issue. We got an urgent call 2 weeks after I sent the information. Then it took about 3 months to get in.

Genetics took Simon’s blood and discovered he had additional chromosome material on his 20 chromosome. They then took Dave and my blood to determine if we were a carrier for this abnormality. After about 5 weeks we got the final karyotype and discovered that Dave had a balanced translocation. The balanced translocation resulted in Simon’s unbalanced translocation. Trisomy 11Q Monosomy 20P.

Simon has had metabolic issues that flare up especially when he’s sick. You think of a brain that has delays and forget that it’s not just cognition, the brain controls the whole body; it’s bound to have other issues. Simon is legally deaf and blind, but does have some capability of both. We are co-signing and doing some tactile communication. He is making choices and learning how to sort and recognize his name! He knows the color red! He is sitting un-assisted for short periods of time. He does not crawl nor walk, he is taking some steps in his gait trainer with few cues. He is one heck of a back scooter.

Simon attends the Utah School for the Deaf and Blind (USDB). He has a communication intervener. He loves swimming, Bruno Mars, Joe Bonamassa and Bob Marley. Simon and I paint together using his hands as the paint brush. We call it Simon’s Hands and use any sales towards medical bills, right now we are fundraising for a wheelchair van. https://www.facebook.com/pages/Simons-Hands/289522724401772 Simon is also good at clapping patterns and he’s starting to vocalize the pattern. He is so smart and you can just see that glimmer of mischief in his eyes.

Simon has two fantastic big brothers, Joseph (22) and Hayden (20). They adore their brother. Hayden taught Simon how to give high fives. Joseph is like having another parent around, full of concern and care.

Simon is my Simon. That’s all he needs to be. I love him just as he is. I wasn’t expecting this long, sometimes heartbreaking road, but I’m glad I got to walk it. I’ve experienced so many wonderful things too. He’s had a very rough year and it is never easy to see him struggle with his health and goodness knows we thought we were going to lose him often. But he is almost ten years old! His delays never bothered me. I guess I’m just pragmatic and I tend to only worry about what is in my power to change. Simon is everything I never knew, I always wanted.

Valorie Dodart
valvied@yahoo.com