Living With Conditions Find a Specialist
The Medical Home
Families with a baby diagnosed with a condition as a result of newborn screening often benefit from having a team of doctors and other health care professionals around them, working together on the child’s medical care and treatment. Your baby’s primary care provider is at the center of this team, and can serve as a ‘medical home’ by working with you to make sure your family’s needs are met. For genetic conditions, sometimes a medical geneticist will act as the medical home or main coordinator of your child’s care. The role of the medical home is to make sure that all team members have the same information and that the child is receiving all necessary care.
Your baby’s health care provider or medical geneticist can give you a referral to other professionals who have special knowledge about your child’s condition, or a part of your child’s condition. These professionals are called specialists. Your child may need to see different specialists at different times throughout his or her growth and development. Examples of such specialists include pulmonologists (specialists in lung conditions and diseases), immunologists (specialists in conditions of the immune system), or endocrinologists (specialists in disorders of the glands).
Other forms of specialists include nutritionists, genetic counselors, and social workers. Each team member has a specific role in making sure your child stays healthy and happy. Your child’s health care provider will ensure you have the proper referrals to the various specialists you may need to see for your child’s condition. Visit the Find a Condition section and enter your child’s diagnosis to learn details about the treatment and management of your baby’s condition, the kinds of professionals you may need to see, and who will care for and support your family and your child.
The goal of meeting with a genetic counselor or medical geneticist is to help you understand your baby’s newborn screening results, the causes of genetic conditions, the testing options you can consider, and the impact this diagnosis can have on other family members and future pregnancies.
Making Sense of Your Genes: Guide to Genetic Counseling is a guide that provides you with information on what to expect in, and how to prepare for, a meeting with a genetic counselor.