Baby Hawk came into this world without any problems. But, when he was just 3 weeks old, he had a spontaneous brain hemorrhage that completely changed his life.
Now at 5 years old, Hawk is mobile (and vocal) in the Otteroo.
His mom, Katie Harrison, tells us about their experience.
Tell us about Hawk’s brain hemorrhage.
He was born typical, but at 3 weeks old he had a brain hemorrhage that was just random, spontaneous, no family history, no warning. Now we think it’s from a blood clotting disorder that they just can’t find; it’s not anything that’s been discovered, anyway. He’s been tested for everything. It turns out he had a massive clot in his brain that backed up and caused the hemorrhage. It started with vomiting, we didn’t know why. Then he had a seizure and they did a CT scan in the ER and saw the massive bleed and flew him to the children’s hospital in Atlanta. They had to put him into a coma, put drains in his head, lines all over him to try to save his life. They didn’t think much would ever happen even if he did survive. There was no sort of prognosis of anything normal for sure.
He survived. He now has a shunt (tube in the brain to help drain and redirect fluid) and he continues to have some seizures. He has a G-Tube (Gastrostomy Tube). He can’t stand or sit on his own. He makes sounds, but not words. He’s just globally delayed and completely dependent on someone caring for him.
We just live life. He’s super happy and such a well-adjusted child. He just loves, and plays, and communicates with us. He has way more of a full life than anybody would have guessed with the damage he sustained.
As a first-time parent, I can’t imagine how scary that must have been.
We had no idea. We just didn’t know what was going wrong, what was happening, or what to think. But, it became our normal.
Even though Hawk is 5, he’s just 33 pounds, so you’re still able to use the Otteroo. How did you discover it?
We had been trying a different swim ring but because Hawk’s brain is not growing, he has a very small head, especially on the back where it’s flat. We found the ring that we were using didn’t quite fit. So, when we saw the Otteroo, we decided to try it — we like the Otteroo better. It seems to fit Hawk a lot better. We’ve used the Otteroo ever since. Swimming is such an enjoyable activity for him. It’s one of his favorite things for sure. That’s the first time he found his voice: when we put him in the water in the ring.
Wow. Tell us about that.
He just made a sound all of the sudden, we can’t explain why. He’s not making words, but it’s “his” talking. He’ll just talk, talk, talk, talk, talk after that. He’ll kick like crazy and splash. He uses it now all summer. We also bought a small, outdoor pool. He swims around the whole time he’s in there. We have two Otteroo rings now. We leave one at home and we leave the other one at therapy. Hawk uses it there, and they use it with other children as well.
Hawk has been using an inflatable ring for four years?
Oh, yeah. It’s one of the best things in our life. It was just the best moment, since he’d been injured. When we put him in the water the first time, it was sort of miraculous. My mom, Hawk’s dad, we all just cried and cried and cried. It was literally the best moment from the time since before he was injured. For us, it was a major breakthrough.
How do other people respond to it?
I love people’s reactions to it. They’ll look at it, see a picture or video of it, and they’ll tell you later on, “When I first saw that I wondered what kind of contraption you had rigged around your kid’s neck, and I was thinking this is not okay.” (Laughing)
Then they see it, and of course they’re amazed. We’ve told so many people about it. So many people ask, so we’re constantly tagging you guys and sending people your way because it’s just changed so much for his life.
What does Hawk’s therapist think about it?
They love it. I tell everybody: every therapist, the hospital, the rehab unit. I tell everyone they need it. They can work with him and their hands are freed up and they’re not worried about him aspirating or whether or not he can balance. He’s not leaning on his arms; he can use everything he has to swim.
Sometimes, the therapists are like, “I don’t know what my job really is anymore because you can just let him go.” And he likes it better when you just let him go (laughing).
What do you think he enjoys about it most: the independence or mobility?
Both. And that he can do something by himself. He’s very proud of himself. I don’t know what it is with the verbalizing or vocalizing, but there’s definitely a connection for him that when he gets moving in the pool like that, he makes so many sounds. Just happy, happy sounds. Because he only makes sounds when he’s happy.
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