Introduction

The first and most important thing for you to do is to celebrate the birth of your new child with your family and friends!!

We have prepared this resource to assist you and your family to understand and come to terms with a life that may be a little different to others. Sometimes a little more challenging, but similarly rewarding.

You might choose to come back to this resource later, or you might read on now if you are ready. But before reading on, please remember that all people are individuals. You, and our children living with PWS are no exception. Each will develop their own strengths, personalities, gifts, and life coping strategies. Look for the little gifts and celebrate them!

Emotional response to the diagnosis

All parents and family members have varying emotional responses to the diagnosis, but all of them are natural and valid. You may not be feeling the same as your partner, or your child’s grandparents, but everyone’s feelings are just as important.

It may take a while for you to come to terms with your own feelings about the diagnosis, and they may well change over time, going through different stages. You may be able to identify with some or all the feelings described in this article.

Our knowledge of PWS is growing all the time and in the years since it was first recognised, treatments such as early intervention therapies and growth hormone therapy are now available which make our children’s lives so much better.

We also have the National Disability Insurance Scheme (NDIS) to enable ‘participants’ to purchase ‘reasonable and necessary’ supports to live an ‘ordinary life’. See ‘PWS and the NDIS’ for more detail.

With research continuing, it is likely that other aspects of PWS will eventually become treatable. So, it is important to bear in mind these positive messages for the future.

We will explore some of the very natural reactions you may experience when your child is given a diagnosis of PWS. Remember, we are always here to help if you would like a friendly chat about your feelings or just a listening ear. Let’s work together for a better future for our children.

A different journey

There is a wonderful short essay often used to help parents come to terms with this different journey which they find themselves on. It is called “Welcome to Holland!” and you can read it at www.our-kids.org/Archives/Holland.html

Grief

You may feel that your hopes for your child’s future have suddenly been shattered and feel grief for what your child might have been or done in their life. You will need to come to terms with the knowledge that you and your child are now going down a different road to the one you had envisaged.

Perhaps you feel depressed at the thought of what the future holds or suspect that you will be unable to cope. For mothers, if these thoughts have occurred just after your baby was born, it may be difficult to tell whether your depression results from hormonal changes after pregnancy (and would have occurred even if your baby did not have PWS), or the fact that your baby has PWS – or both. Your GP or community nurse can offer practical help and advice. Depression usually passes quickly, but we advise you to discuss your feelings with your GP.

Anger and bewilderment

You may feel angry, confused, or bewildered that things have turned out differently from what you had expected. “Why, of all the people in the world, did it have to happen to me?”

Guilt

You may feel guilty that PWS has occurred because of something that you or your partner did or did not do before you conceived, or while you were pregnant. You may feel that it is a kind of ‘punishment’ for something you or your family did in the past. Our current knowledge is that no-one is to blame; nor could PWS have been prevented.

Disbelief

You may experience a feeling of disbelief. ‘How can they say there is anything wrong with my child? How do they know? He’ll be OK once he (or she) gets older.’ Sometimes one parent may be feeling this, whilst the other is more accepting of the diagnosis, some even relieved to know the diagnosis. This seems to be a particularly common feeling amongst grandparents and other family members. Sometimes many years will pass before the diagnosis is fully accepted.

Rejection

Some parents experience a feeling of rejection of their child, particularly if the diagnosis occurs soon after birth. Labour may have been very difficult, or by Caesarean section. The baby is not crying, not wanting to be fed, and is probably in a special care unit. Initial bonding with your child may thus be difficult, and the shock of diagnosis can make things much worse. Hospital or medical personnel will be aware of this possibility and will generally take steps to offer counselling, advice, or practical help if you explain your feelings to them.

Relief and justification

If the diagnosis has come several months after your child was born, you may have always suspected there was something different about your child, and that you are not just an ‘anxious parent’. It also means that having the diagnosis can open gateways to the specialist care your child needs.

Sharing your feelings

If you are having difficulties with coming to terms with your feelings, and you think they are having a negative effect on you, your child, or other family members, a trained counsellor may be available through your GP. However, it is often parents of other children with disabilities – not just PWS – who can offer the understanding and sympathy you may need; many will have struggled with the same feelings as you.

PWSA runs special events for parents from time to time in different areas of the country. If you are a member of PWSA or have signed up to our mailing list, we will notify you of any events available in your area. You can also send a request to social@pws.org.au

You can also read about how other parents of babies with PWS came to terms with the diagnosis in the PWSA online resources visit the Facebook page.

Contact the office on 1800 pws aus (1800 797 287) for details.

Quotes from other parents

“I don’t like to say there’s something wrong with my son, he’s just different” (like everyone else)

“We’re sure everyone who comes into contact with our little girl benefits. When things sometimes get difficult, we look at her smile or watch her while she sleeps, and we know we have been given a very special person. She may need lots of time and patience, but we all get so much back.”

“We’ve had to deal with more emotions during the first months of our baby’s life than many parents face in a lifetime. You’ve got to take care that PWS doesn’t overtake your child’s individuality and become the most important thing about them. We’re just happy to have such a loving, beautiful baby who we will never take for-granted. And so far, the smiles have far outweighed the tears.”

“Caring for my daughter was a completely different world to the one I had been preparing for during my pregnancy and all the rules were different. But I’ve found it to be a rewarding world where the achievements are greater, and just to see her cheeky smile fills me with the greatest pleasure possible. I no longer mind the challenges I face. I’ve also gained confidence and a respect from others I didn’t have before.”

Misdiagnosis

A wrong or misdiagnosis can occur, but it is quite rare, and even less likely these days with sophisticated genetic testing techniques. However, if as your child gets older, he shows traits markedly different from those you would expect in someone with PWS, you should raise your doubts with your child’s consultant and ask for further testing.

Thank you ….

to PWSA UK for sharing the original source material which has been adapted for Australia.