Finally found out what’s wrong with my child – I’m so excited

9 years ago, I was told my child had a heart defect. He wasn’t even born yet.

We were told that he’d have to be induced early, and then flown to Portland for open heart surgery immediately. They were sure his heart wouldn’t be able to support itself.

When he was born, he was so small. He was in the 0 percentile. He was born at 37 wks. Once he was born, NICU rushed in to check on his heart. It was stable. No surgery needed.

He was also born with some other physical defects, mostly his ears. (He has the cutest ears)

At a little over a month old, on Mother’s Day, we had to rush him to the hospital. His temperature was 87 degrees. His heart wasn’t circulating blood properly. He wasn’t responding to stimuli. He had pneumonia and RSV. He was in the hospital for weeks. We almost lost him. We were told that him getting sick again could be fatal.

At a few months old, the defect had no changes. Doctors warned that he couldn’t handle stress. His heart couldn‘t support it. We were told he’d never be able to participate in high activity play. No running, no sports, no jungle gyms. He couldn’t be a kid.

We wrapped him in bubble wrap. He still got sick. All. The. Time. We spent a lot of time in doctor offices, and hospitals.

He didn’t officially talk until he was about 2. He wasn’t making sentences for a while after that. He was such a happy baby though. He loved being in his walker and exploring his surroundings.

He’s always been a little bit behind for most things. But he is so intelligent. He just doesn’t always know how to use the intelligence he has.

He got scans of his heart regularly. Every 6 months. When he was about 3, we started noticing changes. His defect was getting better. We had hope. He could play. He could be a normal kid. We moved to annual scans!

By the time he was 5, his heart defect was gone! Now he only had a murmur and an irregular heart beat. This was the best news we’d ever gotten. He was going to have a long, healthy life.

He started getting sick less, and less severe. We didn’t have to go to the hospital every time he got a cold.

When he was 5, we brought him in to get genetic testing done. All these years we weren’t able to find what caused his defects, or his delays. They found some minor abnormalities in his results, but we had no clue what they meant.

In the last year or so, his murmur has gone away, and his heart beat is now regular.

He’s still small, and delayed. He has little to no hand strength, or fine motor skills. He’s still behind academically, but not by much in certain subjects. He’s ahead in reading. He’s still behind in math, spelling, and still cannot write. He’s a social little butterfly, who loves everyone. He’s active, he’s smart. He’s sweet. He loves reading, dinosaurs, cars, and playing outside.

He has continued to defy odds, and not let anyone tell him he can’t do something.

He’s a fighter.

Yesterday. We had an appointment with the same doctor who ran the genetics testing. The abnormalities that once held no meaning to us, now contain the answer. More research has been done on his code, and what they mean. He’s one of few that has the 4q duplication.

The duplication within his chromosomes is the reason for everything. It’s the cause of his delays, his failure to grow, his behavior, his defects….Everything. It is at no fault to anyone. There is no cause, or cure. He just has a fluke in his DNA. 2 little duplications in his genetic code.

After a lifetime of searching, we finally have an answer. A lifetime of wondering what I did to cause it. Of people accusing neglect, and abuse being the cause of his delays and size. We have had no less than 2 dozen OCS visits due to people (even teachers!) claiming that his delays and failure to grow were due to neglect. His whole life being talked about, belittled, and made fun of for being smaller and behind other kids his age.

This news has been earth shattering. We now know what makes him the way he is. We now have medical documentation for it. We now have a metaphoric middle finger for those who caused so much drama and strain due to their accusations and words.

He is an amazing, strong, special, miracle child. He has survived against all odds. Not just survived, but thrived.

This is obviously not the end of our journey. There is still so much we have to learn about his condition. So much research to do. We have no clue what the future holds for us. He continues growing. Little by little. He will always be a little bit behind. But I know that he will continue to thrive, and make us proud.