Emotional Considerations


Having a new baby is a stressful event even under the best of circumstances.
During pregnancy, you probably imagined what your baby looks like and what
sex it is. After birth, you have to make the transition from that fantasy
baby to your real baby. The first few days after birth, you deal with those
issues and breathe a sigh of relief that at least you have a healthy baby.
Then the other shoe drops, and you discover the problem. Your baby is healthy
but has this imperfection. The little imperfection to your rising terror
is growing, and you don't know what to do. When you have no control over
your child's appearance because of a disfiguring birthmark, there is no
greater feeling of helplessness.

Having a child with a defect imposes a crisis on the whole family. As a parent,
it's normal to go through the phases of the grief process: the shock and
disbelief, denial, anger, and finally, acceptance.

Feelings of guilt result from not producing a physically perfect child. Whether
you say it or not, you wonder if you did something wrong to cause the
defect. You did nothing wrong; it just happened. It's quite normal to
bounce back and forth over the different phases of the grief process.

The real work begins when you come to a state of acceptance and gain the hope
that you can find a way to help your child. The quest for information
and a direction begins.

Most children with vascular birthmarks have been observed to be withdrawn and
shy. They often walk with their head down and are only most comfortable
with their own siblings or close relatives where they are unconditionally
loved and accepted. In the waiting room of a Vascular Birthmark Clinic,
children are happy to see other children like themselves. They play easily
and without fear of being rejected by these other children because they
are different.

Don't hide your child to protect them. Don't rule out nursery school or the
other activities that other children enjoy. You merely need to do some
anticipatory guidance. Go to the school before your child's first day
and talk with the teacher and the children. Explain about the birthmark
and show pictures of what it looks like. Explain that the doctor is making
it go away in time. This approach has worked very successfully for those
who have tried it. Your child can only benefit from being a part of the
class and having the opportunity to interact with other children. The
other children have the opportunity to learn sensitivity and compassion.
It's a win-win situation.

Everyone in the family suffers in his or her own way. Siblings have their own set
of problems in dealing with this family crisis. For the older brother
or sister, it can cause great guilt, "Why didn't this happen to me?"
They can be angry about the time and attention paid to the disfigured
child, while finding themselves constantly defending their brother or
sister's birthmark to others.

One positive realization is that you have no real control over what happened.
You didn't cause it, and you can't be responsible for making it totally
OK for everyone else around you, including your child. You can only do
the best you can.

You may be tempted to devote your life to this perfect child with an imperfection
- don't. You must maintain a balance in your relationships with the rest
of your family. Your real strength is in each other. If you retreat into
the martyr role, you close out the people in your life who can help you
get through this, all of you miss out on the chance to become stronger
in the process. This includes your spouse, your children, and your extended
family.

There are consequences of closing yourself off and depression is one. If you're
depressed, you can't help your child or yourself. You don't have to put
up a brave front for everyone else. Reach out to those who can help you
work through this in the most positive, productive way.

An unresolved crisis can be deadly to your relationship with your spouse.
When couples can't connect and share their pain, hopes, and make plans,
divorce is not uncommon. The crisis can make or break your relationship
with each other. You don't need to heap one crisis on another. If you
feel isolated and find communication difficult with each other, talk to
someone who can help you sort things out: your spiritual advisor, or a
therapist.

The most valuable gift to your child is your role model in working through
adversity by being connected to those around you in mutually supportive
ways. Let relatives and friends know what you need from them. You don't
want their pity. What you need is understanding and support. It's OK to
tell them just that. When you need some time to yourself, ask someone
to baby-sit for you. For example, tell your mom or a friend you want her
to cook you some meals for the freezer for those days when you have trouble
coping. It's the little things that help the most.

Because there is so little awareness of vascular birthmarks, the general public
has no frame of reference on how to deal with children or adults they
meet with a disfiguring birthmark. How to deal with the stares, the well-meaning
concerns, the insensitivity and sometimes the outright hostility of other
people who see your child, is one of the most difficult things parents
have to endure.

Your best defense is a benign offense: If you see someone staring or obviously
talking about your child, go to that person and tell them you noticed
their interest. Explain that your child has a birthmark that's being treated.
Be friendly. Educating people is the best way to diffuse insensitive remarks
or those who are mistakenly fearful you're abusing your child in some
way. If you get tired of explaining, make up small cards with an explanation
and just hand it to the curious person or the one who asks directly what
happened. Most people don't mean to be insensitive; give everybody the
benefit of the doubt.