Ryan William Steele

Ryan’s Story

Heart“We take one day at a time and thank God every day for each day we have with Ryan…”

Ryan William Steele, Mosaic Trisomy 18, Virginia Beach, VA, 12/23/1999

The Steele Family: “Being happy doesn’t mean everything’s perfect; it just means you’ve decided to see beyond the imperfections.” Hi! Welcome to our site! Dad works full time for the Navy.  Mom’s job is taking care of the kids. Abigail is a very responsible and active 15 year old, Ryan, 12 years old is our great smiler, laugher and little hero and Ella is our 6 year old with the biggest personality! The Navy brought us to Virginia Beach, VA. We have moved from CA to FL to CA again, to RI and back to FL.

Keep scrolling down to see pictures and read about our kids, especially Ryan who has Mosaic Trisomy 18. Abigail turned 15 in December.  She just started high school . She is in the International Baccalaureate Middle Years Program. She has been playing soccer for several years and viola and just started running cross country for her school.  I  have to brag a little and say what a wonderful young lady she is… she is such a huge help and continues to amaze us with her caring and compassionate ways.

Ryan turned 12 in December.  He loves to smile as you can see! And loves being paid attention to. When he was 3 months old he was diagnosed with Mosaic Trisomy 18. This is a chromosomal abnormality causing Ryan to have an extra 18th chromosome in some of his body cells. The extra chromosome has caused medical problems and developmental delays.  Some of Ryan’s medical issues are GERD, scoliosis, swallowing difficulties, VSD (repaired Oct 2000), laryngomalatia, trachealmalatia, bronchialmalatia and myoclonic seizures. Following Ryan’s VSD repair he suffered an Hypoxic Enchephalopathy.

This condition has caused spasticity, cortical blindness, and contributed to his hip displaysia.  Developmentally he is at about a 4-6 month level. Ryan attends middle school and is in a  6th grade special ed class where he  has wonderful teachers.  Ella arrived in April of 2005. She is in first grade now. She has changed our family dynamics drastically! She  is a very talkative,creative  and loving young lady.   Its been so much fun watching the other children interact with her and Ella interact with them.  Singing, dancing, arts and crafts, reading and soccer are all the things she loves to do!

After a totally normal pregnancy of 41 weeks, Ryan was born on December 23, 1999, weighing in at 7 lb 6 oz and measuring 19 inches in length.  He had Apgars of 9 and 10 and seemed perfectly normal. His only difficulty was latching on during  breast feeding.  We were discharged late Christmas eve.  He and I struggled for the next 2 days trying to get him to nurse. We finally set up an appointment with a lactation consultant at our Navy Hospital where Ryan was born.  We met with her for an hour, and during that time, had some luck.  That same day, we visited the pediatrician. Ryan was running a  fever, so they admitted him to the hospital.

After 2 days and blood, urine and spinal cultures, he was released. But by that time was down to about 6 lbs. At 2 weeks of age, his pediatrician suspected a heart defect and referred us to a pediatric cardiologist.  Ryan met with him at 3 weeks of age and was diagnosed with a fairly large VSD.  Over the next few weeks we struggled with feedings and very slow weight gain. At six weeks of age, his cardiologist decided he did not look good, and needed to be admitted to the local children’s hospital for congestive heart failure. It was during that stay that we were taught NG tube feedings.

At first, Rick and I were both horrified at the thought of inserting a tube down our son’s nose!  Well, he came home, and slowly started to gain weight. but since more food was now going in, he started to reflux. We dealt with that and he continued to be monitored by the cardiologists. But then someone mentioned his “low set ears.” We tried to get more information , but no one seemed to want to answer those questions.. At 3 months of age, Ryan was admitted to have a heart cath done. It was then that the geneticist was called in. They ran tests on his blood and the results came back a few days later – MOSAIC TRISOMY 18.

Along with the heart cath, Ryan received a blood transfusion from Daddy, started a new cardiac medication and GAINED a pound in a week. He was also baptized that week at the hospital. Busy week for him! We get this diagnosis and have never heard of Trisomy 18! The geneticist is on vacation and our pediatrician explains what he can. So we go to the Internet and are scared to death! A week later, our geneticist returns and meets with us and explains that Ryan will be writing his own book because he is Mosaic. Mosaic means that Ryan has cells with the extra 18th chromosome as well as normal cells.  He couldn’t promise us that Ryan would live a long life, but he also gave us hope that with good medical care, Ryan had a fighting chance.

Ryan was in and out of the hospital a few more times for fevers, but his feedings by mouth improved enough that we stopped the NG feedings in July. My husband was deployed for 6 months, so my mom and I with my kids, attended the SOFT(Support Organization for Trisomy 18, 13) conference in Orlando. What a wonderful experience! We returned from Orlando and had another visit with the cardiologist. By that time, Ryan’s weight gain had slowed down again, his heart medications were at their limit, the hole had not gotten smaller on its own and it was time to operate. Rick ( Daddy) returned from his deployment mid Sept and the surgery was scheduled for Oct. 5th.  Ryan was running one of the “routine” temps of 102 degrees, but after running some tests, the surgeon and anesthesiologist decided to go ahead. Ryan sailed through the surgery itself, but then things went downhill upon his arrival to the PICU. By that evening his temp was up to 107 and they could not get it down.

Ryan suffered circulatory collapse which resulted in a neurological insult. After 5 weeks in the hospital, we brought home a totally different baby. Ryan was rigid, was not seeing or hearing and cried 95% of the day and night.  We were given little hope that this would change. Well, here we are over 11 years later…. 4 more SOFT conferences, a lot of doctors visits, a  g-tube, bilateral hip adductor release surgery (February 2002), 2 sets of ear tubes, tonsillectomy, addenoidectomy,  a supraglotoplasty, broken femur,  2 wheelchairs and many, many visits from his therapists. Ryan has made wonderful progress!  He is hearing (after having his first set of tubes placed in February 2001) and vocalizing.   He has seizures, but on the positive side of things, can hold his head up, SMILES, LAUGHS, is gaining weight and growing taller. He has begun getting Botox injections to help with his spasticity..  Tricare is also now providing 5 nights of nursing care in our home to help out with Ryan.  We take one day at a time and thank God every day for each day we have with Ryan, his big sister Abigail and little sister Ella! We also thank God for all of our family and friends who have helped and supported us on this journey!