How Birth Brain Injuries Affect Parents & Families

Detailed below are a few effects and life changes that parents and families can likely anticipate regardless of your infant’s specific injury and symptoms.

The Importance of Embracing Support

Post-diagnosis, you are likely going through a range of emotions that include anxiety, anger, denial, fear of future uncertainty, sadness, and perhaps guilt and wondering if you could have done something to prevent the injury. You may also feel inundated by the barrage of information from your doctors and your own research while you are trying to prepare to be able to provide a wonderful future for your baby.

Please know, however, that it is more than possible for your infant to live a happy, fulfilling, and successful life, regardless of their brain birth injury. Moreover, speaking from the experience of other parents whose infants were diagnosed with similar injuries, you will have the same joy, unconditional love for, and close relationship with your infant that you would have without the neonatal or birth brain injury.

Further, because this is a difficult time and you are likely feeling such a wide range of emotions, it is important to seek and lean on sources of emotional and psychological support. Whether from loved ones, extended family, and friends, or professional therapists and counselors, making sure that you are getting the support that you need is a crucial step in the process. In particular, mothers whose infants are diagnosed with brain injuries from birth are more likely to experience depression and post-traumatic stress disorder, making it that much more difficult or impossible to care for the infant (which, depending on the severity of the injury, may require even more round-the-clock care). Therefore, please ensure that you – and particularly the child’s mother – are receiving the help (and therapy and medications, if necessary) that you need. You should also know that there are many different support groups available for parents and families with infants with brain birth injuries that can act as a welcome support system and source of comfort.

What to Expect

As parents and families of a child with brain injury, your life will probably look a little different than you had previously imagined. First, you are going to be in hospitals and doctors’ offices more than with infants without brain or neonatal injuries. Your physicians are going to want to keep a close eye on your child, monitor their development, and run frequent tests so that they (and you) understand the nature of your child’s brain injury and any consequent disabilities and effects more so you better know how to treat and care for your child. As seizures are a very common symptom and a side effect of infant brain problems, you may have to prepare yourself to rush to the hospital if one of these (or other major side effect) occurs.

Second, you will probably have more people in your home and your infant’s life than you expected. In addition to doting family members, friends and babysitters, you and your infant will probably interact regularly with one or a cadre of specialists, such as speech, developmental and physio therapists. Your infant’s life (and yours) will probably be busy with different types of appointments. Further, between the additional doctors/hospital visits and specialist appointments, you may find that you have more to juggle in addition to work, raising any other children, and caring for your home.

Third, your home might look a little different than you imagined, as you will probably have around your home (and have to budget money for) various types of equipment and perhaps medications that you did not anticipate. Depending on the effects of the brain or neonatal injury of your infant, you may have to do away with fragile or dangerous items within their reach for longer than you would typically need to baby-proof your home. Further, your infant may have special needs such as a wheelchair, toilet or bath chairs, or other equipment. Many parents of children with disabilities or issues arising from birth brain damage choose to homeschool their kids – this will also affect your home and how you spend your time.

Fourth, and again, depending on how your child’s brain damage manifests itself, your child may have behavior issues that affect your family. Tantrums, difficulty making friends, social anxiety, and depression may affect your child and subsequently, your family. Try to engage your child in as many social interactions as possible, and make sure your physicians and mental health support system are kept up to date with any behavior changes and issues so that your child can receive whatever care is available and necessary.

Finally, and importantly, your infant will require a lot of attention and care. This can be taxing on parents and also taxing on any other children in the family. Please ensure that you take the time to take care of yourself. There are respite care options by which trained professionals can care for your child while you run errands, go to an appointment, work trip, or a much-needed getaway. Also, your other children may feel guilty about voicing any lack of attention they are feeling, so make sure that your other children know that they are just as important to you and involve them in any family counseling or support efforts that you decide to partake in.

Rest assured, while there are challenges ahead, also know that there are many families that have a child with a birth brain or neonatal injury in their homes. Even so, with adequate support and making use of the resources available to them, many, many of those homes are full of health, happiness, and love.