It is currently unclear why children are born with dysmelia, but there is some inheritance. In many countries, about 60 children per year are born with dysmelia.
Symptoms of dysmelia
Dysmelia occurs during the fetal stage and the child is born with injuries to the arms or legs. The injury is usually far out, for example, the hand or foot may be missing.
The injuries are divided into two groups:
- Transverse injuries occur transversely so that, for example, the entire arm or outer part of the arm and hand are missing.
- Longitudinal damage means that one skeletal bone is missing in the longitudinal direction of the arms or legs.
When and where should I seek care?
Those who have had a child with dysmelia should already have the opportunity to get in touch with the care system at BB. In the county councils where there is dysmelite teams, the health care contact with the parents as soon as possible after birth, preferably already at BB. A dysmelite team includes, for example, pediatric orthopedics, pediatricians, hand surgeons, orthopedic engineers, physiotherapists, nurses, curators, and occupational therapists. Dysmeliteam is for example in Stockholm, Örebro, Gothenburg, and Malmö.
If a dysmelite team is missing in your county council, you can instead get in touch with the local habilitation activities for children with special needs and a pediatric clinic where the child’s general growth and development are followed. The child can, if necessary, be referred to the dysmelite team closest to his place of residence.
The pediatrician makes an assessment of the injury and the child’s neurological development. The doctor then assesses what help the child needs in order to live as independent a life as possible.
Treatment of dysmelia
A prosthesis is a common tool for children and adults who lack part of the arm and whole hand or part of the leg and foot. To learn how to use your prosthesis in the best way possible, you will be offered to train in groups with other children or individually.
Sometimes the child may need surgery to improve functional ability, for example, to create a grip or correct a misalignment of the foot.
The treatment of dysmelia also includes various types of exercise to train muscle strength and suppleness. It can also be about training to be able to do movements and activities in a different way.
The children are offered regular follow-up visits for support during their upbringing. The goal is to enable the child to do the same things as children of the same age can.
There are various aids that can make everyday life easier for children and adults with dysmelia.
Influence and participate in your care
In order for you to be able to participate in the care and treatment, it is important that you understand the information you receive from the healthcare staff. Ask questions if you don’t understand. For example, you should receive information about the treatment of dysmelia options and how long you may have to wait for care and treatment.
If you need tools, you should get information about what is available and how to get it.
Your consent is important
Once you have received information about what options and options for the care you have, you can give your consent or otherwise express a yes. This also applies to you who are not of legal age.
You may choose not to give your consent to the care you are offered. You may also withdraw your consent at any time.
You can get a new medical assessment
You may get a new medical assessment from another doctor. Obtaining another doctor’s assessment can help you, for example, if you are unsure of which treatment of dysmelia is best.