When you get a diagnoses for your child that equates to them not being perfect, it takes time to process and absorb. What does this mean? What kind of life will they have? How will this affect their future?
My life changed November 2006. I was going in for a routine 20 week check up. I already have problems with hemorrhaging (bleeding) from 12-20 weeks. But I only spotted this pregnancy. Everything was going well, I was anticipating being let off bed rest. To go on with my normal pregnancy and my normal baby and my normal life. I knew at 16 weeks that we would be bringing home our 2nd son. A brother for our 3 year old. He was very excited to get his best friend.
At our 20 week checkup, the doctor decided to do an ultrasound to make sure everything looked good with the placenta. I was laying on the table with my husband beside me, the doctor was looking very intently at the monitor. After what seemed for forever, I asked about the placenta (as that was the problem, right?), He moved the wand across my belly, “yup, the placenta looks great” as he moves the wand back into its previous position, he paused again and my husband pointed at the screen. I knew instantly that there was something wrong with my baby.
There was a mass in his abdomen. We were sent to a specialist that specializes in in vitro surgery. He watched us every week for another couple of months. It was decided that while our baby boy was growing, the mass was staying the same size. In vitro surgery was ruled out. We were then sent to a high risk pregnancy doctor at the University of Utah. After a few more weeks, it was decided that while our baby indeed needed to have surgery, he would not need it until after he was born. A phone call was made and a surgeon was picked out. We still had so many unanswered questions. Why the mass? What was the mass? What did this mass mean for our son?
By the time I reached 37 weeks, it was decided that he was big enough for surgery. My induction date was set. Upon birth, it was confirmed that he was born with an imperforated anus. Or, he had no bum hole. We also learned that he had a deformed right ear lobe and possibly no ear canal. Surgery was set for first thing the next morning, he was to be given an ostomy bag while they figured out where his intestine ended as it was not attached where it should have been.
Over the next few weeks, we were given the closest diagnosis they could come up with, that of Oculo-Auricul-Vertebral Spectrum. (10 years later, I still can’t say it without looking at it.) For as much trouble that his anus has given us, we learned that it was only a subsidy of his actual diagnosis. He was non-symmetrical. This meant that his right and left side did not match up, leaving him with a list of problems. From top to bottom, microtia/atresia right ear (no ear canal or ear lobe), he had deformed vertebrae in his neck, extra ribs fused with his collar bone, a hole in his heart between ventricle chambers (normal for most kids, but his did not close up) called a VSD, scoliosis presented itself when he was 18 months old), and his imperforated anus.
A few of his conditions that have been cleared up since his birth were skin tags that he removed himself because they were small, or surgeon’s removed while already in surgery, his tonsils and adenoids were removed at 10 months for sleep apnea, his misaligned jaw was about 90% corrected thanks to some advice from a facial plastic surgeon who recommended that Hyrum suck on his binky until he left for kindergarten.
Was there anything that I did to cause these birth defects? It was a common question that we asked every doctor. We didn’t like watching our son go through these problems. But sometimes the answer is a little out of reach and out of our control. For Hyrum the answer was a perfect storm. We had moved from low elevation to high elevation, I was placed on a baby aspirin for a few short weeks, and then the genetic factor played its card. Do we know what was the trigger or actual cause? No. If we could time travel would we change anything? Probably not as we don’t know what the cause was but love him and wouldn’t want to avoid having him. So, how can anyone answer that question. His trials and struggles have made him who he is today.
Hyrum is now 10 years old. Hyrum has had a total of 20 surgery (times he was put under anesthesia) and most surgeries they combined multiple procedures into one operating theatre event. That doesn’t sound too bad now, you’re thinking wow that’s 2 per year. When in reality, his 15th surgery was just after he turned 15 months old. He did not learn to crawl until 2 days after that particular surgery and he did not learn to walk until he was 20 months old. When he was 5 weeks old, we learned that he could not have morphine or dilaudid as it slowed down his heart enough that he quit breathing. By the time we left the hospital when he was 7 weeks old, he had spent 2 weeks at home, had 7 surgeries, 1 bought of RSV, an NG tube, feeding tube, and 2 rushes to ICU for not breathing (thanks to the meds).
Hyrum is a good sport and tenacious. His preschool teacher used to tell me, “When there’s a way, there’s a Hyrum.” He had the will to figure out a way to whatever he wanted to do. He was born positive. And sometimes he had the attitude that he knew how to do anything, which he was more than willing to demonstrate to me. He has also made it known without words that one day he would be smarter than his dad who is a genius speed reading computer scientist. And we believe he will do it.
Hyrum is very loving. At school, there is a buddy bench near the playground. If a person sits on the buddy bench, then it helps others to know that they need a friend. Hyrum monitors that buddy bench, when he sees a child on the bench he quickly takes them off and helps them to find a friend. I watch him comfort other kids or his older siblings, I feel like it actually pains him to see others hurt.
Hyrum loves to laugh. He is positive that half the world loves him, and that the other half would love him if they just got to know him. He is always coming up with funny things to say. Like, he is allergic to babies, especially poopy babies. He is also allergic to cactus and carrots. And he doesn’t like things getting into his “eyebrow space bubble.” Yet he is like this next generation that is adept with technology and thinks wi-fi is ubiquitous and doesn’t understand why it doesn’t grow on trees.
Hyrum loves to laugh. He is positive that half the world loves him, and that the other half would love him if they just got to know him. He is always coming up with funny things to say. Like, he is allergic to babies, especially poopy babies. He is also allergic to cactus and carrots. And he doesn’t like things getting into his “eyebrow space bubble.” Yet he is like this next generation that is adept with technology and thinks wi-fi is ubiquitous and doesn’t understand why it doesn’t grow on trees.
