Caring for Your Family
Children with congenital athymia need very special care—and so do their caregivers. Keep yourself informed, connected, and supported.Here's how
A child with congenital athymia will be cared for by a team of healthcare professionals, which may include the following specialists:
Immunologist (your first contact after diagnosis)
Pediatric endocrinologist (hormone specialist)
Cardiologist (heart specialist)
Otolaryngologist (ear, nose, and throat specialist)
Infectious disease specialist
Seeing doctors within the same institution or hospital may help them to communicate and work together more effectively.
Children with congenital athymia often have other problems—such as heart disease, rash, an underactive parathyroid gland, or physical deformities.
Some children may need hearing aids, vision support, feeding support, help with breathing, and/or physical, speech, occupational, or behavioral therapy. Others may need major surgery for associated conditions.
Children with congenital athymia should not receive any live or inactivated vaccines prior to correcting the underlying immune disorder. These vaccines rely on a functioning immune system and can be dangerous to children with few or no working T cells.
In addition, both in the hospital and at home, children with congenital athymia need to be isolated to avoid coming into contact with germs that can cause infections. At the hospital, a child with congenital athymia may stay in an isolation room where you, along with hospital staff and visitors, will be required to thoroughly wash hands and wear clean hair covers, masks, shoe covers, sterile gowns, and gloves.
Anyone who comes into contact with a child with congenital athymia needs to know that something as simple as a cold can be very dangerous.
Tell friends and family members that your child has a life-threatening disorder that keeps his or her immune system from working properly
Ask your other children’s schools to notify you if any illness breaks out that siblings could bring home
Explain to visitors that they will need to follow your plan to avoid introducing germs into the home
Ask if all family members are up to date on their vaccinations
Avoid taking a child with congenital athymia to public places, especially where there are lots of other children
Use email, FaceTime, Skype, or other messaging apps to interact with others
Limit visitors to your home to minimize the introduction of germs
Schedule healthcare appointments before or after normal business hours to limit exposure
Frequently wipe down household surfaces and items, such as doorknobs, cell phones, tablets, car keys, and remote controls
Make it a habit for everyone to wash their hands frequently
Consider a sanitation station at the entrance to your home to allow anyone entering to disinfect, remove shoes, and put on masks, gowns, and gloves
Buy disposable paper products to simplify cleaning and disinfecting
Children with life-threatening immune disorders need a lot of love, attention, and support—but you need to take care of yourself, too.
Parents and caregivers of children with immune disorders can experience feelings of extreme isolation, stress, and anxiety and may benefit from learning coping mechanisms from a family counselor or therapist.
Keep your own interpersonal relationships healthy, including those with your other children. Also, it may help you to build a support system among family members, friends, healthcare team members, and peers affected by immune disorders. Many caregivers turn to social networks to find other families and organizations familiar with this condition. Having a network of people who know what you’re going through can be invaluable.
Connect with others for additional information and support on living with congenital athymia.