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Living Well

Importance of Newborn Screening

Soon after birth, all babies born in the United States are checked for certain medical conditions, including sickle cell disease. This is called newborn screening. Finding these conditions soon after birth can help prevent some serious problems, such as brain damage, organ damage, and even death.

Babies that are born in a hospital should be screened before they leave the hospital. Parents should take babies that are not born in a hospital or those that were not screened before leaving the hospital to a hospital or clinic to be checked within a few days of birth.

Early diagnosis and treatment of sickle cell is important. A baby with sickle cell disease is at risk for harmful infections. These babies can take a daily dose of penicillin, an antibiotic medicine, to help prevent infections. Although the penicillin will not change the fact that the baby has sickle cell disease, it can help prevent serious problems.

Living Well

The sooner you know a child has sickle cell disease, the better. Parents can take steps to keep their child healthy and well. The following tips will help you, or someone you know with sickle cell disease, stay as healthy as possible.

Find Good Medical Care

Sickle cell disease is a complex disease. Good quality medical care from doctors and nurses who know a lot about the disease can help prevent some serious problems. Often the best choice is a hematologist (a doctor who specializes in blood diseases) working with a team of specialists.

Get Regular Checkups

Regular health checkups with a primary care doctor can help prevent some serious problems.

  • Babies from birth to 1 year of age should see a doctor every 2 to 3 months.
  • Children from 1 to 2 years of age should see a doctor at least every 3 months.
  • Children and adults from 2 years of age or older should see a doctor at least once every year.

Prevent Infections

People with sickle cell disease, especially infants and children, are more at risk for harmful infections. Common illnesses, like the flu, can quickly become dangerous for a child with sickle cell disease. Pneumonia is a leading cause of death in infants and young children with sickle cell disease. The best defense is to take simple steps to help prevent infections.

Vaccines can protect against harmful infections. Babies and children with sickle cell disease should have all of the regular childhood vaccines, plus a few extra. The extra ones are:

  • Flu vaccine (influenza vaccine) every year after 6 months of age.
  • A special pneumococcal vaccine (called 23-valent pneumococcal vaccine) at 2 and 5 years of age.
  • The pneumococcal conjugate vaccine (PCV13) between 6 and 18 years of age, if the child hasn’t previously received the vaccine.
  • Meningococcal vaccine, if recommended by a doctor.

In addition, children with sickle cell disease should receive a daily dose of penicillin, an antibiotic medicine, to help prevent infections. This can begin at 2 months of age and continue until the child is at least 5 years of age.

Learn Healthy Habits

People with sickle cell disease should drink 8 to 10 glasses of water every day and eat healthy food. Try not to get too hot, too cold, or too tired.

Children can, and should, participate in physical activity to help stay healthy. However, it’s important that they don’t overdo it, rest when tired, and drink plenty of water.