Caring for Special Needs Babies, Over the Longer Term

We’ve written about ‘What You Need to Know About Bringing Home a Sick Baby’, covering those few hours and days after your baby is released from the NICU. In this post, we’re going to look at caregiving over the longer term, for a special needs baby.

What are special needs?

When we say ‘special needs’, we’re referring to a baby that has a physical or intellectual disability, either because of a premature or difficult birth, a congenital issue that developed during pregnancy. This is the kind of issue that isn’t going to resolve over time.

Examples of special needs would include autism, cerebral palsy, down syndrome, and cystic fibrosis, but basically, anything outside of a normal, healthy baby can be included in the definition of ‘special needs’.

Beyond those first days at home…

Once you get beyond those first days at home and have mastered G-Tube feeding or whatever other special care requirements your baby has, it’s time to start thinking longer term.

Working with siblings – Depending on their ages, you might have prepared siblings for the fact that the baby you are bringing home isn’t perfectly normal, but it’s important not to dwell on ‘differences’. A baby is a baby, after all! If there are special care needs for baby, or if they are immunocompromised, you might want to keep siblings at a distance for a while, until the baby is stronger. Same goes for friends and family who want to visit!

Sharing the news – It can be easier to share the news of a less than perfect birth through one person that you designate. Whether that’s a parent or best friend, it’s at times easier for a parent NOT to be the one sharing as you cannot anticipate people’s reactions but not everyone has a positive one!

Look to the good – For some new parents, losing the dream of the ‘perfect’ baby can be difficult, creating anxiety and even fear. There can be blame and worries that they somehow caused the situation. More often than not, that is untrue. There is no doubt that there are a lot of issues to consider and decisions to make but it’s important to remember that, beyond medical needs, your baby will need love and attention, just like any baby would. Snuggles and kisses are the order of the day! Take time to enjoy them!

Find support – Whether that’s in the form of in-home nursing care to get you on the road to handling your baby’s medical concerns independently, or just a support group of parents who also have children with the same disability, you will find comfort in knowing that you’re not alone dealing with this new reality.

“Indeed the advent of new medical technologies and procedures means the survival rate for children born with complex health needs is increasing. The stakes are high and not just for health care practitioners. Increasing numbers of parents are compelled by circumstance to offer home, hearth and complex care to their venerable offspring.” (Source)

Focus on care – Baby might need special care at first, but so do you! Having a normal, healthy baby is a BIG change to anyone’s life. Having a baby who currently and will likely always require a different style or amount of care adds another layer to the scope of the change. Start thinking not only about the immediate care, but longer term.

If you are adding anyone to your longer term care plans, like a respite care nurse for example, you should start looking and working with one as soon as you can. Centralizing the care to a few people who will know your family will give you the reassurance you’ll need for the day you need to leave your child in that person’s hands for a few hours or even a few days.