The birth of
a child brings immense pride and joy. When a child is born with
a facial difference or other birth anomaly, a wave of unexpected
emotions often floods a new parent. Fear, shock, anger, confusion,
guilt are commonly felt but never planned. You are not alone. Most
parents experience some combination of these emotions, mixed of
course with the wonder and excitement of this new birth.
Here we provide
a list of things to consider as you begin this journey of parenting
a child with a facial difference. They are gleaned from parents
and professionals with extensive experience with children like yours.
Learn from what seems important to you and disregard the rest.
Learn about
your child's condition
As a parent,
you have a new role as advocate for your child's unique needs. Find
out about your child's condition from your Craniofacial Anomalies
team and other medical professionals, parents of children with the
same condition, organizations specializing in support and treatment
of your child's condition, medical journals, and the Internet. Ask
questions and take notes. However, be discerning. Some sources are
incorrect or exaggerate statistics. Also, another parent's experience
of the condition may vary considerably from your own. Use your best
judgment and keep your child's best interest in mind.
Seek Support
You may be experiencing
a mix of emotions at the birth of your child. For most people there
is often a time of grieving the loss of the child they had hoped
for. This varies among individuals and there is no right or wrong
way to respond. But whether it is the stress of new parenthood or
the uncertainty of raising a child with a facial difference, all
of us need support in one form or another. Take an honest look at
what you need to be the parent you want to be. Accept offers of
help or support. If not offered, don't be afraid to ask for support
from family, friends, church, counselors or support organizations.
Raising a child with a facial difference is a unique challenge.
Take advantage of the resources available to help you be the parent
you long to be.
Meet other
parents of children with similar conditions
Sometimes the
most helpful source of information and reassurance comes from those
who have gone before us. Find a parent you feel has coped well with
their child's differences. There are good role models and not so
good ones. As you become comfortable in your role as parent and
advocate, consider being a mentor parent yourself.
Plan your
responses to curious onlookers
One of the most
difficult things about having a facial difference is losing a sense
of privacy in public places. Honestly, people will notice your child's
face if it looks different. Unfortunately you need to expect this
and plan ways to respond. People may stare, ask questions or even
make negative comments. It is important for you to learn and to
model for your child ways of dealing with other people's reactions.
Thinking ahead of time about your responses can reduce anxiety considerably.
Your actions, thoughts and words can make a big difference in most
any encounter. Understand that most people are just curious and
mean no harm.
- Develop a simple,
one line response to curiosity questions such as "my child's
name is Mary and she was born this way" or "my child's
name is Jose and he was born with a syndrome called X." Make
it simple, honest and easy to remember.
- Reassure
the other person. All of us are uncomfortable with the unknown
and often fear the worst when encountering something different.
Let them know "it doesn't hurt" (if it doesn't!). Providing
calm and confident explanations can ease anxiety and educate other
people about differences.
- Let people
know if their words or actions are hurtful. Try to be assertive
without being aggressive or angry. Angry responses can communicate
to your child that there is something to be ashamed of.
- Decide when
and with whom you will share "the long answer." Sometimes
sharing your child's unique story is helpful for you and educational
for the other person. You need to decide when and with whom you
will share the whole story.
Remember
the needs of your other children
Your other children
will also be affected by having a sibling with a facial difference.
Encourage them to ask questions and give them clear, honest and
age-appropriate responses. Help them develop a simple response of
their own to curiosity questions. Find time to give special attention
to your other children. Jealousy when a new sibling arrives is normal,
but often it is greater when a baby requires special attention.
Above all,
enjoy your child
Keep in mind
that your baby is a baby first and a baby with a facial difference
second. Guilt is a very common response to a child born with a difference;
it is something most parents need to work through even though the
anomaly was in no way the parents' fault. If later in life a child
senses their parents' guilt, sadly it often translates into a child
feeling there is something to be ashamed of or embarrassed about.
Don't hesitate to seek help should guilt or other emotions seem
to overwhelm you. Remember, your child's condition is not your fault.
Spend quality time with your child, discovering and appreciating
his or her unique personality, character and as he or she grows,
talents. As with any child, love, nurture and acceptance are key
to healthy development. There is no greater gift you can give your
child than unconditional love.
