Lucia is a 7 year old female referred to us for a “heart murmur” that was picked up by a visiting pediatrician in a rural community. When we saw her, she was complaining of a lot of shortness of breath and difficulty with exercise.
And no wonder! She had a very loud murmur that strongly suggested a serious heart defect. We immediately performed an ultrasound of the heart, which confirmed a diagnosis of a double outlet right ventricle, a rare and very complex form of congenital heart disease. We were also concerned that it might be “too late” to operate, because often by children are this age with a defect like this, there is irreversible damage to the lungs which prevents surgery. However, after performing a cardiac catheterization to examine the pressure inside the heart and lungs, we were happy to find out that surgery was an option.
There were many logistical difficulties. Among these, the most important was that the child’s family did not speak any Spanish. Therefore, they had a very hard time understanding the risks associated both with surgery and also with postponing surgery. Fortunately, this is an area that Wuqu’ Kawoq excels in! Our K’ichee’ speaking staff were be able to accompany the family at all of their pre surgical appointments as well as during the hospital stay and providing interpretation, accompaniment, and emotional support.
I had the opportunity to see Lucia in her home last week after a successful surgery. She is a very serious child – I’ve never seen her smile! Nevertheless, she informed us that she had been “waiting for us to come and visit” so that she could show us where she lived. Her father reported that her symptoms of fatigue and trouble with exercise have largely disappeared.
Another successful patient advocacy intervention!
* Lucia and her parents have given us permission to tell her story and use her photo.