We have previously been discussing the well-known ‘butterfly children’ disease, an illness characterised by the fragility of the patient's skin, causing blisters and sores at the slightest friction or even appearing spontaneously. Nevertheless, a picture is worth a thousand words to demonstrate how these children are affected by this disease in their daily life. On this occasion, we are looking at the problem of how to find an appropriate child restraint system which does not cause them any problems and which allows them to travel safely.
The Butterfly Children Association DEBRA outlines in its brochures the difficult situation which children with this disease have to face when traveling by car. In many instances, the child car seat becomes more akin to a torture device. This picture clearly demonstrates what we are discussing:
At DEBRA they point out that there is not much known about this disease in Spain and that treatments are needed. They also believe that there is scarcely any government aid in place for the needs of those suffering from this illness and there is no National Reference Center where patients can be seen by specialists in this field. Furthermore, they report that the wound care materials that they need on a daily basis are not covered by Social Security.
Added to this are the many problems that children with this disease face on a daily basis. Something as fundamental as traveling in an adequate child restraint system can become a real problem. ‘Any restraint system can easily cause injury’, the association assures us. Although child car seats have cushioned and comfortable harnesses for babies, butterfly children can face difficulties 'given that the materials which the harnesses are made out of, the seat belt itself and the movement of the car can cause minor or serious lesions depending on the type of restraint and the fragility of the baby's skin', they point out.
As DEBRA indicates, epidermolysis bullosa can cause skin problems (blisters and sores, nail problems, itching, localised or diffuse alopecia, scarring, discoloration of the skin, membrane formation, itchiness causing scratching leading to wounds…), extracutaneous complications (musculoskeletal deformities, eyesight problems, intraoral problems, gastrointestinal problems and intestinal tract complications…) and other internal complications such as cardiomyopathy, kidney failure, genitourinary tract complications, osteoporosis, osteopenia and anemia.
Difficulties of traveling in a child car seat
The Butterfly Skin Association denounce that ‘there is no child car seat designed specifically for Epidermolysis, making it extremely difficult to find an adequate child restraint system’. In fact, parents will purchase the child car seat that best suits their child and then make adjustments to the harnesses and seat, usually by cushioning and protecting them.
In this sense, the main problems lie with the harnesses, namely, the way in which the child car seat holds the child in place.
‘How one goes about placing the child in the car seat is also an important factor, given that children with Epidermolysis cannot be picked up in the way that we would normally pick up a child, but rather we need to use specific techniques in order not to hurt them, which is something that can often make it much harder to put them in their seat', they point out.
Another factor to take into consideration is how these children should put their arms into the harnesses. It is difficult to get the harnesses to stay open and they are usually too tight to be able to put your arms into them without damaging the skin. This simple act can prove especially complicated.
Not having any help to buy specific child car seats means that it is the families themselves who have to make their own homemade adaptations. ‘There is no specific help out there for purchasing this product, meaning that, like any other family, they will choose the seat they believe is the most appropriate and will pay for it themselves', they explain.
Aware of the difficultes facing children with special requirements and thanks to the help of a number of donors, Fundación MAPFRE is developing a child seat demonstrator project for children with brittle bones.
In this regard, DEBRA considers that this is a very necessary project, 'given that safety measures should be effective for all groups, taking into account the specificities and characteristics of each one of them. Daily tasks such as getting into the car to take your child to day care or to visit a family member are much more difficult in the case of diseases for which standard systems are not effective. As a result, families stop doing certain activities because of the harm done to their child on the journey. Therefore, ensuring that your child's safety does not lead to continued harm is fundamental in the case of many diseases such as the one being discussed here or brittle bone disease.
Advice on how to travel safely by car
The association emphasizes the importance of using a child car seat adapted to the needs of the child.
In this sense, during a car trip, and particularly on a long journey, it is a good idea to take breaks in order to avoid constant friction in the same area and to avoid sweating as a result of the significant cushioning of the child car seat. It is also important to maintain a constant body temperature because blisters can form if the child sweats.
Likewise, Fundación MAPFRE recommends using soft clothing to avoid abrasions, and wearing soft mittons or gloves at night to avoid friction and sores.
As previously mentioned, the child car seats can be adapted so they do not cause friction. One option is to use foam fillers on surfaces that may be rubbed against, such as chairs in the home, the beds, car seats and, of course, the child restraint systems.
In any case, the best option is to follow the expert's instructions in order to be able to travel with your child in the safest way possible.