There is the misconception that birth defects are somehow only
something that might make a child stick out in a crowd, such as a
shortened leg, a club foot, or a missing limb. In other cases the
opinion might be that a birth defect is something that affects the
inner organs of a child and upon surgery is not noticeable. Even as
these scenarios are true upon occasion, when your child’s birth
defects turn you into a home healthcare provider, you will most
certainly battle with feelings of guilt, inadequacy, fear, and a
severe lack of sleep.

You nursery will rival a hospital ward with its blinking machines,
beeping gadgets, and monitors that alert you to your child’s
heartbeat, breathing, and also nutrient intake. When at first
confronted with durable medical equipment, many a parent is shocked
and feels woefully inadequate. Fortunately, home healthcare agencies
are at your beck and call and able to train you in the use of the
machines until you feel comfortable with them. It is a wise idea to
involve each and every family member in the training, including an
outside caregiver such as a babysitter who has declared herself
willing to be called upon to provide you with babysitting services for
your child.

Your best course of action involves the services of a devoted social
worker who will be there to oversee the collaboration of different
service agencies and who will gently but firmly help you to step into
the position of your child’s home healthcare provider. Here are some
things to remember as you are ready to embrace this development in
your child’s health needs:

It may be necessary to change your child’s room to one that has more
space for the medical equipment or more outlets. Most medical
equipment will specify that an extension is not to be used, and thus
you will need to have a direct plug to wall connection.

Have a phone installed in your child’s room and keep emergency
numbers and your physician phone numbers close by.

Emergency medical procedures should be listed on placards which you
laminate.

Equipment troubleshooting steps need to be listed as well and taped
onto the walls near the applicable medical equipment.

Discuss earthquake, flood, or tornado preparedness with your
physicians and get their suggestions of what to do in these emergency
situations.

If you live in areas affected by rolling blackouts, contact your
power company to alert them to the fact that you have a family member
living at home who is relying on medical equipment. This will get you
off the main grid and most likely switched into the same grid as
hospitals.

Understand what interferes with your child’s health care equipment.
For example, will your cell phone or laptop interfere with the heart
monitor? A running washer or dryer, if too close to your baby’s crib,
may interfere with the proper functioning of the child’s apnea monitor
by providing false positive readings. Be mindful of these
interferences and find ways to eliminate them.