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HCP IconGetting to Know Your Team

A child with congenital athymia will be cared for by a team of healthcare professionals, which may include the following specialists:

Seeing doctors within the same institution or hospital may help them to communicate and work together more effectively.

Caring for the Whole Child

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.

Creating a plan can help you and your doctors agree on the best approach to care.

Keeping Your Home Healthy

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.

Microscope IconCommunicate Openly

  • 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

Microscope IconTake Isolation Measures

  • 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

Microscope IconMake a Clean Routine

  • 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

Download: Ways to Keep Your Home Healthy

Taking Care of Yourself IconTaking Care of Yourself

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.

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