January 2022 – After the NICU

Jenny R. McCormick, Senior Editor, PreemieWorld

CDC recognizes January as National Birth Defects Awareness Month. Meeting the complex needs of a preemie with birth defects involves the whole family and can be challenging at times. But finding resources, knowing what to expect, and planning for the future can help.

  • Early Intervention Support Services: supports that are available to babies and young children with developmental delays and disabilities and their families. Find your state or territory’s early intervention program
  • Congenital Heart Defects: Babies born with heart conditions are the #1 type of birth defect in the U.S., affecting 1 in every 110 people. Need support? Check out Mended Little Hearts. https://mendedhearts.org/
  • Spina Bifida: Meeting the complex needs of a child affected by spina bifida involves the whole family and can be challenging at times. Here are some guidelines for the care of people with Spina Bifida sorted by age. https://www.spinabifidaassociation.org/guidelines/guidelines-by-age/
  • Muscular Dystrophies: There are different types of MD with signs and symptoms that can appear at different ages and with varying severity. Use this website to learn more about physical developmental delays in children ages 5 and under. https://www.healthychildren.org/English/MotorDelay/Pages/default.aspx
  • Down Syndrome: Children with Down syndrome may need physical, occupational, and speech therapy to help with their development. Find local support in your area. https://www.ndss.org/resources/local-support/
  • Other Birth Defects: Some babies born with birth defects may also have physical and intellectual disabilities. Specifically, research has shown that children with cleft lip and cleft palate, craniosynostosis, microcephaly, and encephalocele can benefit from developmental services that improve their physical and intellectual abilities.

The exact ages of developmental milestones are different for each child. As a parent, you know your child best. If you think there could be a problem with the way your child plays, learns, speaks, acts, or moves, talk to your child’s doctor and share your concerns. Families, educators, and healthcare providers can work together to set meaningful goals and create a plan to help children living with birth defects reach their full potential.

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