This month Aowyns story of her infant battle with Kawasaki’s Disease was featured in Alabama Baby and Child magazine. I realized when I was contacted to share the story with them that I had never actually really shared her story on the blog before. I briefly had talked about it but hadn’t gone into great detail.
(shortly after being discharged from the hospital)
Aowyn was a very happy, super cuddly baby. She was zombie crawling or rolling all over the house like a champ and trying to walk along the furniture as well as getting into everything. She loved baby dolls, and was constantly talking or singing. She is the only girl of the family and was spoiled by her siblings. She loved her big brothers and they loved her. She was hardly ever alone because she always had someone right behind her or beside her.
We had just barely moved to Utah a few months before and didn’t know hardly anyone.
She was 10 months and only 6 weeks away from turning a year old. I had already started planning her birthday party. We had our family Halloween costumes picked out and the kids were ready to collect all the candy.
When she first got sick I thought it might have just been a cold but then the fever began. Her fever was 103 and wouldn’t come down with Tylenol, cool baths or any of the other “tricks”. For being such a little lady I knew that couldn’t be a good thing and made her an appointment right away. When I first took her to the doctor he told me it was viral and to keep an eye on her. At that time all she had was a fever.
The rash developed the very next day. The fever and the rash would be the two symptoms that would end up staying the whole time while the others would come and go.
Her fever would eventually get up to 105 and still the medicine wouldn’t touch it. I called and made her another appointment the very next day.
They explained to me what Kawasaki’s disease was (Kawasaki disease, also known as mucocutaneous lymph node syndrome, is a disease in which blood vessels throughout the body become inflamed) and that the treatment consisted of IVIG (immunoglobulin) medicine given through an IV, as well as aspirin. They said that the treatment wouldn’t hurt her if it wasn’t Kawasaki’s disease but that if it was then her symptoms would begin to subside within a few short hours and she would begin to act like her old self again. They also informed me that they could run a few tests to confirm Kawasaki’s but because it was so hard to test for and most of the tests were cultures it would take a few days to show a true diagnosis. By now it was the early morning of day 9. They also told me about the 10 day window (at 10 days the child develops risk of having a heart attack and long-term heart damage, even death and for the treatment to actually be effective) and said the choice was mine if I wanted to proceed with the treatment or not, but that I needed to decide quickly because our safe window was running out.
Aowyns year old pictures
I urge you, if you think your child is sick with more just the common cold to not stop getting a second or even third, fourth or fifth opinion. Find a doctor who will listen. Take pictures of all the new developing symptoms and take them to your doctors appointments. I later went back to the base doctors and let them have it about not listening to me. No one apologized they just said they had never seen a case of it before so they weren’t prepared to diagnose it. Unfortunately while that may be true it’s not an excuse. Doctors need to be better informed and parents need to be more persistent.
A few months after our experience with this, Greys Anatomy did an episode about Kawasaki’s Disease. I bawled my eyes out the whole time because I knew exactly what the mom (the actress actually went through this with her own child a few years prior) went through, right down to the fact that the doctors wouldn’t listen to her and treated her like she was crazy. Don’t let our terrible experience be yours. (click all the above pink words to be taken to articles about Kawasaki’s disease) I rewatched the episode last month and even after 5 years the emotions were still so raw and real for me.