Hello.. Our 4 year old daughter has HLHS. Her last surgery was the Fontan which was done in July 09'. She also has a pacemaker which was placed in Dec 06' due to difficulties with ectopic atrial tachycardia following her bidirectional Glen surgery. She has been doing very well and is currently only taking Captopril 3x daily.
I have never really received a straight answer regarding what type of activities are considered to be "safe" for her to participate in? Sports, amusement park rides (rollercoasters), etc? We try not to prohibit her from doing things that she enjoys, but my main concern is keeping her safe and not letting her participate in any activities that put her at risk. Any feedback you can give me on what we should be limiting/not limiting/avoiding alltogether would be greatly appreciated!
Without evaluating your daughter specifically, I cannot determine everything that she can do; those will have to be determined by your cardiologist. However, there are a few things to keep in mind for patients with hypoplastic left heart syndrome (HLHS). Due to her Fontan physiology, it is advisable to avoid significantly prolonged exposure to altitudes greater than 7500 feet (although airplane travel, where the plane is pressurized to 8000 feet, is fine). Since she has a pacemaker, she should avoid contact sports or other activities in which trauma could damage the pacemaker generator or lead. Due to the G forces generated that can damage the brain, I would say that it is inappropriate for ANY four-year old to ride on a roller coaster. Beyond that, though, she should be able to exercise as tolerated and participate as best as she can. Overall, the majority of children with HLHS have about 85% the exercise capacity of a child with a normal heart, though there is certainly wide variation in both directions.
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