The challenge to do something as seemingly simple as dressing a child with hydranencephaly is very real. Combine the possibility of high tone, with low tone, or a mix of tone dependent upon the day and the weather and whatever else is happening in their little lives – along with the unpredictable nature of the condition in itself – and you have a recipe for a difficult situation. Many benefit from muscle relaxing treatments and pharmaceutical or natural interventions. When this task becomes incredibly difficult, to the point that it’s a struggle for you and your child, please don’t hesitate to speak with your child’s pediatrician, neuro-team, or therapy team to discuss your options. Your physical therapist will be a great resource to have this discussion with to work on the art of dressing – whether it be a roll over method, or massage techniques prior to the attempt, or whatever creative style you can come up with together that works for you and yoru child. A larger-than-typical head can make dressing difficult – think onesies with side buttons at top, polo/button-up shirts, or shirts a little big that they can be put on feet first and pulled up to the top. Tight little arms can be hard to bend in to sleeves:
Those little arms can be hard to bend:
Undressing an older hydran child:
Some recommendations: - dress your child on a surface that is a comfortable height for you and a safe place for them: customized bed, changing tables, or whatever you can use to minimize damage to your own back - dress your child in clothing that is comfortable to put on and take off of your child; consider clothing options that are maybe a size larger than necessary, shirts with a button or more, elastic pants, and maneuverable fabrics.
Dressing an older hydran child:
Keep in mind once your child uses an adaptive stroller or chair that sitting causes pants to pull up on the legs, so being sure pants are long enough is something to keep in mind.
Something else to consider is that your child will be sitting more often than in any other position – feeder seats, adapted strollers/wheelchairs, etc. You’re going to want longer pants to keep their legs covered when in those positions. You’re also going to want to explore special outerwear such as chair adapted ponchos and jackets, but options exist to eliminate the price tag that accompanies adapted outerwear – regular ponchos, snuggies, or even a regular coat put on backwards!
Some examples of adapted clothing:
Layers are going to be your ultimate styling goal. With hydranencephaly comes the inability to regulate body temperature and the season doesn’t always dictate whether the child will be cool, warm, or baking hot! Those layers need to be easy to pile on our peel off, depending on your child’s needs. Also with a diagnosis of hydranencephaly comes the need for bibs, beyond baby-stage. Excess saliva, which results in drooling, is another styling challenge – but no worries, there are bibs for every size available online or you can make your own! Some kiddos have additional feeding supplies which require easy access to the tummy area via sew-on patches.