A newborn baby may be admitted to a neonatal intensive care unit for many different reasons. While most of us are aware of the need for premature babies to stay in the NICU to continue to grow and develop, some of the other reasons babies need specialized care are less widely understood. As a part of NICU awareness month, we’d like to draw some attention to some of the specific reasons a baby may need NICU care and the related resources available to families.

Premature birth itself creates a range of challenges for families, and sometimes medical conditions are part of the reason a child is born early. Full-term newborns may also require NICU care for a range of illnesses and injuries. While all NICU families share many experiences, having a child with an uncommon diagnosis can lead to deepening feelings of isolation. Fortunately, many people have stepped up to create networks devoted to raising awareness and supporting families of children with specific conditions, offering information and an understanding community at a very challenging time. Here are some of the organizations doing this important work:

Down Syndrome, or Trisomy 21, is a chromosomal disorder that can cause a variety of conditions that may require treatment after birth, including heart, respiratory, and digestive problems. The National Down Syndrome Society is a fantastic resource for information and links to support groups for families.

Hydrocephalus is a condition involving the build-up of cerebrospinal fluid in the brain. It may occur as a result of infection, injury, or a birth defect. Treatments involve draining the fluid to other parts of the body where it can be reabsorbed. The Hydrocephalus Association has extensive information and resources for parents on their website.

Having Multiples introduces another level of complication for families. Twins, triplets, etc. are more likely to be born prematurely and require care in the NICU. The compounded stress and responsibility for juggling multiple babies in the hospital, or one at home and one in the NICU, is a lot for any parent to handle. There are many organizations, national and local, that offer support to families of multiples. Raising Multiples is a good resource for information at all stages of the parenting journey, including the early days.

Necrotizing Enterocolitis is a disease related to inflammation and damage of a premature baby’s intestines. The NEC Society is a good source of information about the disease, and has a list of resources for families.

Rare disorders present another level of challenge to some NICU families. The wait for a diagnosis, uncertainty, and special treatment required can make parents feel even more isolated. Connecting with other families online can be especially helpful in such a situation. The National Organization for Rare Disorders offers information and links to patient organizations for a wide range of rare disorders.

These are just some of the resources available to families; do you know of others? We’d love to hear from you! Leave a comment if you have experience with an organization not listed here. And thank you to all the people involved in providing guidance and support to NICU families.