River was born 6 weeks premature. Other than arriving early and being a preemie, it at first appeared that River was a completely healthy baby boy and after a short stint in the NICU he was able to come home with his parents.

It wasn’t until about 4 months of age that River’s mother recognized he simply didn’t have the strength or mobility he should have, even at his young age. He also had some significant torticollis, and exotropia of both eyes where they appeared to wander in different directions much of the day. She immediately brought it to the attention of River’s pediatrician. Because of River’s prematurity, they agreed it was something to watch, but not yet to be overly concerned for a few more months. 

Unfortunately, by 6 months, neither River’s Hypotonia, as it had been diagnosed, nor his exotropia had abated. And to make matters dramatically worse, at just 5 months of age, River was rushed to the hospital in an ambulance because his heart was discovered to be racing at over 300 beats per minute. This was the first episode of River’s Supraventricular Tachycardia (SVT).

So, with a diagnosis of SVT, as well as the underlying Hypotonia leaving River hardly able to move by 7 months, and the exotropia of both his eyes obscuring his vision much of the day, the journey began for River’s family to get him the medications, the therapies, and the surgeries he needs to have the best chances possible as he grows into a toddler and beyond.

Perhaps the most difficult part to understand emotionally is that River’s Hypotonia isn’t really a true diagnosis itself, but rather a symptom. The Hypotonia is caused by something either genetic or neurological in origin.

However, River’s story is not without some silver linings. While he has returned to the hospital for other episodes of SVT, it is largely under control with medication and there is a high likelihood it will resolve as he gets older and stronger. At 14 months after nearly a year of eye patching for 2 hours a day, River underwent surgery on both eyes. For the first few hours after he awoke from the anesthesia, he just looked and touched his mother’s face to take in the person he is closest with in the world. 

Most notably River has made remarkable strides since beginning physical therapy, occupational therapy, and aquatic therapy. He can get himself to a seated position on his own and hold it comfortably indefinitely now. At the time of this writing, he’s even beginning to crawl on all fours and pull himself to kneeling positions.

River’s parents are excited for River to get the specialized care he desperately needs to combat his genetic hurdles. River’s quality of life is vastly improved by his ability to receive intervention early and regularly.