Firstly, congratulations on the birth of your baby. We know that the news that your baby has Prader-Willi syndrome (PWS) will have come as quite a shock, but we want to reassure you that things are not as bleak as they seem at the moment and that the team at PWSA UK are here to help and hold your hand every step of the way.

Getting the news

Most parents find out that their baby has PWS soon after birth. It is important for you to know that nothing done before or during pregnancy can cause PWS. It occurs in all races, social classes and in all countries throughout the world. Anyone can have a baby with PWS. We think that between 30-40 babies are born each year in the UK and that there are around 2,000 individuals with the syndrome.

It can 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 could 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 may feel depressed about what the future holds after your baby is born - if this persists talk to your GP or health visitor. It could be that you feel anger and bewilderment that things turned out differently from what you had expected. 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.

Many parents tell us that it is best to focus on the here and now and not look too far into the future. There will be good days and bad days, but before you know it, the good days will start to outweigh the bad. As the days and weeks pass you will get to know your baby, you will begin to see them as a unique person with their own individual character.

There’s lots of material about PWS on the internet and it is tempting to want to know as much as possible about it, as soon as possible. Some parents gain reassurance from reading information. One of the most reliable sources is this website you're reading now. If you would like more detailed information about each age group, we can send you our PWS Journey — just ring us and ask for one.

Your baby will have the same needs as all babies. They will need to be fed, they will sleep a lot, they will have a weak cry and need lots of love and cuddles like any other baby. The most important thing that you need to know about PWS is that everyone with the condition is a unique individual.

Children with PWS generally need more time to reach developmental milestones such as sitting-up, walking and talking and they may need some additional support when they go to school. You can find more information about this on this website.

How do I feed my baby?

Many babies with PWS are tube-fed in the early days and weeks. Both breast and bottle feeding can be challenging for your baby, due to weak suck strength and sleepiness, both caused by hypotonia (low muscle tone). Failure to thrive or poor weight gain will be monitored by your health visitor, and you can find more detailed information about this here.

Should I be doing anything special or different with my baby?

In the early weeks and months, enjoy and get to know your baby. Have fun with them, and don’t be afraid to be pro-active. Active and engaging play, such as gently moving baby’s legs in a cycling motion whilst singing a lullaby, can be really effective. Really engage with eye contact and respond to their efforts to communicate with you, just like all parents do.

What about the future?

It can be difficult to keep yourself from thinking about the future and, of course, it is very sensible to think about what may happen in the years ahead and to make provision for it; although as time goes by there will be new developments and changes.

One of the most important developments in recent years has been growth hormone treatment, which has transformed the lives of children with PWS. As more research is carried out, we can expect new treatments for other aspects of PWS as well. Our leaflet, entitled Growth Hormone Therapy for children with PWS, gives further details. This can be found in the New Diagnosis Pack or you can call our support team to ask for one.

What is life like for families?

Having a baby with PWS usually means that family life is somewhat different to other families. However, depending on circumstances, this does not necessarily mean big changes, and introducing positive structures and boundaries can be very helpful. Balancing your baby’s needs and those of other family members can bring unique challenges. Try not to compare your child to others, and never forget your child is a unique individual.

How do I tell my other children about the diagnosis?

If you have other children, decide how much information to pass on to them. This will depend on their ages, understanding and curiosity and they may not remember all you tell them. Just keep listening to them and answering their questions. If you treat PWS as only one aspect of your baby’s life then your other children will soon follow your lead and do the same.

We have produced a leaflet for siblings which you can find here. 

What is life like for people with PWS?

Each child with PWS is individual—some will go to mainstream schools, some to specialist schools and some will start at mainstream and transfer to a special school later on. Individuals with PWS also attend colleges, some do work experience and voluntary work.

Will my baby be healthy?

Children with PWS are generally as healthy as other children, and are also prone to the same childhood illnesses and diseases. Unless your GP or paediatrician advises otherwise, your child should receive ALL the usual childhood vaccinations against disease — there are unlikely to be any side effects from these, other than those usually experienced.

There are some health issues particular to PWS but these do vary considerably between individuals and not all children with PWS will necessarily have them all.

However, you should be aware that babies with PWS do not have a vomiting reflex and are rarely sick, even when they are not very well. Their baseline temperature may be a few degrees lower than normal so a slightly elevated temperature should be investigated.

Individuals with PWS frequently have a decreased sensitivity to pain and so there is a potential danger of underestimating a problem. As PWS babies may have a weak cry, they may not be able to let you know if they are experiencing pain. We have enclosed leaflets for both GP’s and Accident and Emergency staff to make them aware of the more unique aspects of PWS.

Is there any treatment for PWS?

Our knowledge of PWS is growing all the time and in the years since it was first recognised, treatments such as growth hormone therapy are now available which make our children’s lives so much better. Although there is currently no “cure” for PWS, lots of research is being carried out throughout the world and it is likely that other aspects of PWS will eventually become treatable, so it is important to bear these positive messages for the future in mind.

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. If you would like to be put in touch with other parents who have a child with PWS do either drop us an email at admin@pwsa.co.uk or give us a call on 01332 365676.

There are several closed Facebook groups, where our families post queries, experiences and ask for advice. The groups are very supportive and are very welcoming to new parents:

• Facebook Page: Prader-Willi Syndrome Association UK
• PWSA UK Facebook Group, exclusively for parents: PWSA UK Community Hub: Empowering Life with PWS
• PWSA UK Facebook Group, exclusively for siblings age 13+: PWSA UK - Sibs Hub

Facebook community groups:

• PWS Families
• Prader-Willi Syndrome Support UK
• Lovebugs of the UK (PWS) under 5s

PWSA UK also runs events for families in different areas of the country. If you are a member of the Association or have signed up for our weekly e-News, Instant News, we will notify you of any that are happening in your area.

You can access information about our events across all social media channels:

• Twitter: @PWSAUK
• Instagram: @PWSAUK