Beyond Palliative Care – Caring For Edwards Syndrome

A usual plan by doctors for children with Edwards Syndrome is to simply focus on making them, and their caretakers, comfortable. They are prepared for the worst, as the life expectancy for these young patients is generally grim. That said, five to ten percent of people born with Edwards Syndrome do live more than a year and parents have chosen life-extending measures and been able to take care of these affected children with the right medical and social support as they beat the odds together.

Symptom Management 

Edwards Syndrome, or Trisomy 18, has a severe effect on physical and cognitive development. Some of the issues a child born with this condition may have are cosmetic or not particularly dangerous, but others are more pressing and damaging to their health and overall quality of life. Symptoms that can happen include seizures, issues with eating due to a malformed digestive system, heart problems, and trouble with breathing.

These can be treated and advised for as they pop up. Anticonvulsant therapy, orthopedic supports, surgery to repair heart defects, tube feeding, and other interventions are all possible if the caretakers and medical team agree that they are in the patient's best interests and will lead to less suffering and a longer life.

Education and Activity 

A decent percentage of children with Edwards Syndrome who make it past their first year of life will also make it to five years. While they will be significantly disabled, they can still learn and gain skills that will improve their lives. Special education and early interventions programs exist that can  help these children reach developmental goals and can be very rewarding for both caretaker and child to take part in. 

There is a cornucopia of ongoing therapies out there to bring disabled patients in general where they want to be ranging from emotional outlets like music therapy to physical skill-based improvement therapies like speech therapy or vision therapy and many of these will be beneficiary for a child growing up with Edwards Syndrome too.

Prevention

Illnesses that pass in a week or injuries that heal just fine in ordinarily healthy children can kill one with Edwards Syndrome, and prevention of childhood hurts and ailments is easier than dealing with the aftermath. Recommended immunizations, constant supervision to stop accidents before they happen, and alertness to changes in the patient's health as well as regular doctor exams are very important.

Support For Caretakers 

Caring for a disabled child isn't easy, and exhausted, unhappy caretakers need to take care of themselves too. Social services should be taken advantage of to help ease financial and emotional problems, and a system of family and friends or a good support group is an incredibly valuable resource so it's important to maintain these ties with other people. Counseling and therapy for the adults in the equation is a good idea as well to help them deal with complicated feelings on the situation and link them to resources they need.

Resources
Last Reviewed:
December 20, 2016
Last Updated:
October 16, 2017
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