Advice for when Crouzon syndrome is Unexpected...

It is usually during pregnancy that we start to bond with our baby. Many hours are spent day dreaming and talking about what the child may look like and aspirations for the child.

Then when the baby is born there is first the excitement that goes with having a baby, and then often shock when the realisation is made that there is something wrong with the baby's skull and face.

It is not unusual for parents who have a baby with Crouzon Syndrome to feel grief. Having a baby with Crouzon Syndrome can be a huge shock. You have to come to terms with the fact that your baby has been born different and you may need to mourn the loss of the child you had in your mind prior to the birth. It is normal for parents to be upset and feel confused, scared, guilty, disappointed or angry and it may be quite some time before these feelings go away.

The parents may also feel completely overwhelmed by the situation. You may ask questions such as, "How did this happen?" or "What did I do to make this happen?" Paternal age has been identified as a factor but in the majority of cases, nothing . It just happened when the 30 000 genes from both parents combined. The syndrome could not have been prevented by doing something differently before or during pregnancy.

The syndrome may or may not be identified straight away. There may be doctors telling you all sorts of information. Or there may be doctors who do not know much about the condition and refer you on to other specialists. This can be stressful and scary in itself. The unknown factor can be hard to deal with as fears and worries can build up.

Having a baby with Crouzon Syndrome means that not only are the parents affected but the whole family and extended family have to come to terms with having a child who is different in their family. The siblings of the child may have feelings which need airing and siblings need to be listened to over the years ahead. Particularly if the siblings find themselves protecting their brother or sister from teasing and bullying. A lot of emotions can be involved.

It can be hard to go out in public. Everyone looks in prams to see the newborn babies. When your baby looks different to the average baby there may be a want to put a blanket up on the front of the pram to stop people from looking. This could be a short-term solution until your confidence builds. But eventually you will have to find the strength to go out in public with your head held high showing off your beautiful baby.

It can also be hard when introducing your baby to other people, particularly when the people do not know beforehand that the baby has Crouzons. The first time is always the hardest and from my experience most people will be supportive and want to know all about it.

It can also be hard having photos taken. But these things do get easier with time. I found that as my love grew for my babies so did my lack of concern about what other people thought.

You will experience a lot of staring. Usually it is because people are curious. In the adjustment phase this can be hard to deal with and can make you angry or upset. Over time it can become easier to deal with but it may not. I've found comments are more hurtful then the stares. And I don't think in many cases that people think before they speak... I have found that children make the most comments, stare the most and are the most anti-social e.g. won't play with your child, or won't sit beside them. This can be hard to deal with particularly when your child is getting older and begins to realise what is going on.

If someone stares at your baby I've found that if you are fragile, ignore them. If you are feeling confident then give them a smile. They will usually smile back. Be positive. If you wish to go further, then explain simply what Crouzon Syndrome is. It depends of course where you are and what the situation is and how you are feeling. It is often hard to do this in the beginning and very nerve wracking to do so, but it does become easier with time.

Having a baby with a craniofacial syndrome like Crouzons often means learning a whole new lot of medical language to understand the syndrome well. Doctors do not always explain things in everyday language, so some research into the syndrome can help. It also means going to a lot of doctor's appointments. In our case we tell people that we are married to the hospital for the next 18 years. We are there often.

Join a support group in your area if there is one. If not join the Crouzon Support Network - Yahoo groups. This is an email group which is invaluable. It helped me deal with a lot of issues. It helped to read what other people are going through and to ask questions. It is always better to talk to someone who is walking in your shoes.

Some quick tips from my experience:

bullet    Take a deep breath and try to enjoy the bundle of joy infront of you.
bullet    If you are not coping too well with how the baby looks, look at other aspects of your baby. Their hair, their smell, their fingers etc.
bullet    Don't dwell on 'if onlys' for too long.....gather your strength and focus your thoughts on the beautiful baby you have.
bullet    If your baby cannot breast feed, it does not matter. Bottles are just fine. They even have positives as your partner can do the night time feeds!
bullet    Try to get support from someone close if possible and ask for help when you need it.
bullet    And/or join a support group.
bullet    Talk to a counsellor if you are not coping.
bullet    Take one day at a time and try to keep your stress level to a minimum. Your baby will pick up on your stress.
bullet    Be honest with yourself about your feelings. If possible talk about them to someone, especially your partner. You will need each other in the days ahead.
bullet    Enjoy each milestone that your baby makes. Sometimes these milestones will be hard for them to master, and to see them succeed will be precious.
bullet    When you go to see the doctors e.g. plastic surgeon, make sure you have a list of questions to take with you. In the early days we would forget what we wanted to ask because we would be overwhelmed by what we were being told and trying to understand that. Also if possible take someone with you because you can clarify what you heard afterwards. We found that we each heard different things. Take notes if need be.
bullet    Ask for clarification if you don't understand what the doctors tell you. Sometimes doctors forget that we are new at this and don't know all the parts of the skull etc.
bullet    Spend time with your baby and fall in love with them. They will need you to be there for them throughout their life.