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.

There is nothing more heartbreaking than a parent burying her or his
child. It goes against every grain of your being, and the cosmic order
was designed for children to bury their aged parents – not before
presenting them with a gaggle of grandchildren, of course! Yet in some
cases this scenario will never play out and you are the recipient of a
heart breaking diagnosis when birth defects are so severe that your
child may die young, you have to deal with the worst possible
emotions.

Unfortunately, there is not easy way through it. There is not book you
can read that will make it all better, nor is there a group you can
join that will somehow get your through it and keep you on an even
keel all the way through. In a situation where the death of a child
because of a birth defect is a distinct possibility, you can only rely
on two things: your faith, if you have one, and your inner strength.
Help is available from a number of sources, but at the end of the day,
in the dark of night, it is only you who is awake at two in the
morning.

Where the possible death of a newborn is heartbreaking, the possible
death of a young child is a gut wrenching experience for which there
is no good way to prepare. Yet for your child’s sake, you must learn
to work through your grief and help your child deal with her or his
fear and also grief. If your child is undergoing medical treatment and
away from the comforts of home, she or he is most likely scared and
any and every distraction you can bring is welcomed. To this end,
enlist the help of friends and family to sit with your child, read,
play games, watch videos together, and also take meals and do homework
in the child’s room.

Ask open ended questions and hear the clues that indicate your child’s
need to ask questions and to receive reassurances. Whether your child
is in danger of dying, or will need to cope with the reality that her
or his health is temporarily being stabilized but that a relapse may
threaten at any time, the question of death will most likely come up
at some point. Depending on your religious convictions, this is a good
time to share the hope of a future life you have: a life free from
sickness and hospitals, where you will all be able to play together.
Do not refer to death as a long sleep but instead refer to it as a
kind of metamorphosis where the child will live on and will once again
meet up with you.

In this setting, explain to the child that she or he will never be
alone but that there are friends and family members already there who
are waiting to take care of the child until you get there. Bring
pictures of deceased relatives or friends your child may have never
known but may be able to learn to love nonetheless. While it may
appear ghoulish to the onlooker, there is no wrong way to prepare a
young child for the possibility of dying to such an extent that the
actual act no longer poses any fear and anxiety to the little one. The
goal is to keep your child free from fear and anxiety, and every
theologian will agree with you that the religious fine points of what
happens after you die according to whatever set of holy texts you
believe in matter little in the face of a child’s terror.

When birth defects are caused during delivery itself, the heartbreak
and the anger of the parents are inconsolable. After doing everything
right for nine months, their child’s health and future life’s quality
may be severely curtailed and negatively impacted by an ill chosen,
falsely indicated, and perhaps incompetently administered procedure.
Forceps deliveries fall into this category as having a high potential
for causing problems. Yet should you truly discount their vital
functioning?

Generally speaking, forceps are little more than oversized tongs which
are inserted into the vagina to extract an infant who has traversed
far enough out of the uterus to just need that last little bit of help
to make it into the world. Though never planned, forceps are a staple
of most any birthing room in a well stocked hospital and are available
at a moment’s notice if the child should present with sudden distress
that requires immediate removal from the mother’s body. In the same
way, maternal distress brought on by a sudden elevation of the blood
pressure that may result in serious heart problems if pushing is
permitted to continue, may also persuade the attending obstetrician to
utilize the help of forceps.

The birth defects that have been blamed on forceps deliveries are far
reaching and are directly attributable to a doctor’s ability to
properly work with the instrument. Since the forceps are applied to
the child’s head with the intent of pulling the infant from the
mother’s body with the help of the oversized tongs, the danger of
having an inexperienced physician press too hard is high. An immediate
consequence is a skull fracture which in turn may lead to brain
damage. Furthermore, if the pull on the child’s body is too strong for
its delicate bones, the possibility of spinal cord injuries is real
and every present, and a side effect of injuries to this area of the
child’s body is the potential for the infant not being able to breathe
on its own.

Considering the dangers and drawbacks, it is not surprising that many
a physician shies away from the use of forceps and instead opts for
the tried and true Caesarean delivery, yet this trend may cause more
harm than good. Add to this the fact that with forceps an emergency
birth may be affected literally within a few split seconds while a
Caesarean requires preparation time which may permit valuable minutes
to tick away, and you can see why the failure of obstetricians to
permit themselves to be trained in the proper utilization of this
medical instrument is actually contributing to the problems at hand
instead of soling them. Therefore, when birth defects are caused
during a forceps delivery the very fact that a physician may have been
ill advised or inadequately trained to utilize this medical equipment
needs to give pause to the medical establishment as a whole and then
translate into decisive action.  Although not popular with parents and
doctors, the need for training in the area of forceps delivery must be
made a standard practice of anyone who plans to attend births at a
hospital; after all, the last thing you want to endure as a mother who
is about to give birth is the sudden knowledge that your doctor is
unsure how to proceed when the fetal monitor alerts everyone in the
room to a problem that must be dealt with now!

Try as you might, there will come a day when your little one will limp
off to the school bus or pick up her crutches in an effort to make it
into the school building. No longer under your watchful eyes and
ability to carefully select friends and playmates, your child will
need to learn to fend for her- or himself in the real world – in spite
of having a birth defect. While your child should be able to deal with
the less than desirable outcroppings in other children’s behavior due
to the insensitive nature of their questions about the visible birth
defect, there are some behaviors where parental guidance is crucial.

Although in general society would like to pretend that bullying in the
context of physical deformities and abnormalities does not happen
anymore, the sad reality is starkly different. Bullying is alive and
well, and in the harshly defined pecking order that begins in the
middle of elementary school and reaches critical mass during the
middle school years, nothing makes bullying more inviting than a
visible handicap.

When a visible birth defect invites bullying, you need to ensure that
your child is not only able to deal with the event, but also knows to
immediately speak to you about it. Here are some suggestions:
1.    Your child needs to understand what bullying consists of; a little
tease, a good natured joke, and even an insensitive remark do not
necessarily constitute an example of bullying. Instead, it will take
on physical forms such as hitting, pushing, intentionally tripping
your child, calling her or him names, scornfully imitating the
physical appearance of your child, such as by using an exaggerated
limp, and then threatening your child with physical harm if she or he
will tell anyone.
2.    Your child needs to understand that a bully is a person who may
have been mistreated by others and in turn is passing on this learned
behavior. While this does not excuse the other child’s behavior, it
will help your child to see past the threatening and intimidating
behavior of the bully and recognize another scared or scarred kid
underneath.
3.    While your child needs to learn to deal with bullying, you have to
get involved and speak to teachers, the principal, and the other
child’s parents. This is not a time to spare feelings or mince words.
Keeping your temper in check and the child with a friend or relative,
you will need to convey succinctly, briefly, and decisively that you
will not tolerate the bullying of your child to continue. I you meet
resistance and the old “kids will be kids” attitude, do not be afraid
to calmly state that unless immediate action is taken, you will
entertain the thought of legal action against the school district in
general, the school in particular, and also the principal and the
child’s parents. If nothing else, this will get results.
4.    Do not tell your child about this conversation but instead
role-play how to act when bullying happens. Show how to defuse a
situation by walking away, put a bully in her or his place verbally or
by ignoring the child, and practice how to put on a nonchalant
attitude when bullied.