Welcoming a new baby

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Welcoming a new baby

Jan 25, 2024

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Congratulations on the birth of your new baby. This is an exciting time! Many of you will have reached this page after receiving a diagnosis of Prader-Willi syndrome (PWS). Some families have described the diagnosis as a relief. For others it can be confusing and overwhelming.

Living with PWS can be both rewarding and challenging. Many families describe great joy of raising a child living with PWS. The most important thing that you need to know about PWS is that everyone with the condition is a unique individual and will develop their own personality and strengths.

Knowledge about the syndrome will assist you in maximising outcomes for your child as they grow.

However, some families choose to take in just a little information at this early stage and simply enjoy their time with the new family member. If this applies to you, read just this article now, then come back to this Prader-Willi Syndrome Australia (PWSA) website in later years to learn more about various life stages.

 

PWS Australia has put together this welcome article to support you and introduce you to PWS.  There’s background information to get an idea of what to expect, and the various support networks that you may need.

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. Please remember the internet can be useful but can also tell you unhelpful and sometime distressing things which are not always factual. The most reliable sources are on, or via this website, www.pws.org.au.

You may be interested in joining becoming a member of PWS Australia. If so, please fill in the membership form.

You can also follow our PWSA Facebook page, and our PWS and the NDIS (National Disability Insurance Scheme) Facebook page.

Getting the news about PWS

Most parents find out that their baby has PWS soon after birth. But some may not have a diagnosis for months or even years. It is important for you to know that nothing done before or during pregnancy causes 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 15-25 babies are born each year in Australia and that there are around 1,000 individuals living with the syndrome.

It can take a while for you to understand your own feelings about the diagnosis, and they may well change over time, going through different stages. You could feel hopeful or that your hopes for your child’s future have suddenly been shattered. Grief for what your child might have been or done in their life is common. 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. All these feelings are OK. Over time you will need to come to terms with the knowledge that you and your child are now going down a slightly different road to the one you may have 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.

“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 her 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.”

Quote from parent.

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.

Children living 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. For more information about this, you can revisit our website when relevant.

How do I feed my baby?

Many babies with PWS are tube-fed in the early days and weeks. Some are breast and some bottle fed which 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 visits. See the article ‘Feeding and weaning your baby’ for details.

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 effective. Enthusiastically engage with eye contact and respond to their efforts to communicate with you, just like all parents do. Stimulation is important because they haven’t yet got the strength to do ‘baby moves’ themselves.

What about the future?

It can be difficult to keep yourself from thinking about the future. Whilst it is sensible to think what may happen in the near years ahead and to make provision for it, 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. Read more below. As more research is carried out, we can expect new treatments for other aspects of PWS as well. Another parent wrote about their experience of having a baby diagnosed with a disability, called Welcome to Holland.

What is life like for families?

Having a baby that is living 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.

“Our happy, contented baby smiles a hundred times a day, each one melts us. We are so very lucky to have her and take each day as it comes”.

Quote from parent

Be aware that there will be a lot of paperwork, forms and appointments. Contact us if you have any queries. Parents who have already been through it are willing to share with you the processes that worked for them.

How do I tell my other children, family or friends 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’re sure everyone who comes into contact with our little girl benefits. When things get difficult sometimes, 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.”

Quote from parent

Some families chose to not tell friends for a few months, others want to share the diagnosis immediately.

“We waited 6-months before telling our wider friendship group. We practiced what we were going to say and brainstormed what questions our friends may ask. This process gave us the necessary confidence to explain to friends the essentials that they needed to know at this early stage.”

Quote from parent

PWS Australia has articles on ‘Information for brothers and sisters’ and ‘Information for grandparents’ which you share from the PWSA website.

What is life like for people living 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 may also attend TAFE or university, some do work experience and voluntary work with supports.

“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 outweighed the tears.”

Quote from family

Will my baby be healthy?

Most are generally healthy 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 will necessarily have them all. Make sure there are regular checkups with specialists in case any PWS characteristics are present that will eventually need surgery.

Be aware that individuals living 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 living with PWS frequently have a decreased sensitivity to pain and so there is a potential danger of underestimating a problem. As these babies may have a weak cry, they may not be able to let you know if they are experiencing pain.

PWSA has articles for GP’s ‘Healthcare in PWS’, hospital and emergency staff ‘Information for hospitals and emergency department staff’ and dentists ‘Dental tips’ to make them aware of the more unique aspects of PWS. They are ready for you to share with the treating team.

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 can make our children’s lives much better.

Although there is currently no ‘cure’ for PWS, lots of research is being carried out throughout the world. It is likely that other aspects of PWS will eventually become treatable, so it is important to bear these positive messages in mind

Sharing your feelings

If you are having difficulty 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 social@pws.org.au or give us a call on 1800 pws aus (1800 797 297).

You can also share experiences on Australian Facebook groups, where families post queries, experiences and ask for advice.

PWSA also aims to run events for families. If you are a member of PWSA we will notify you of any that are happening. You can also access information about events across all social media channels.

What professionals should I see?

Individuals living with PWS require multi-professional advice and oversight, from infancy onwards.

This should be provided by local services. In some places there are specialist PWS clinics—the current specialist Paediatric PWS clinics in Australia are:

  • Royal Children’s Hospital, Melbourne
  • Sydney – TBA
  • Brisbane – TBA

You can be referred to these by speaking to your GP. PWS Australia can provide a letter of support should it be needed.

Professionals you should see once you have received a diagnosis are:

  • Paediatrician—general overview and referral to other services
  • Endocrine Paediatrician—advice on hormone replacement and PWS
  • Consultant Community Paediatrician—to oversee local services
  • Paediatric dietitian—dietary advice
  • Child Development team—general development and support
  • Physiotherapist– for muscle tone and core strength / gross motor skills
  • Speech and language therapist – for oral development
  • Occupational therapist – fine motor skills

We know this list looks overwhelming. You do not need to see all of these professionals all the time. They should, in time, form a network of support around you to help you and your child through your journey.

Growth hormone treatment

A decision to start your child on Growth Hormone (GH) can feel overwhelming. Parents have a lot of questions around its use and how it is administered. Not all families chose to undertake growth hormone treatment.

There have been many research trials showing clear benefits for most children living with PWS, and these include:

  • Increased growth (height)
  • Improved motor development, muscle strength and tone and better body composition, i.e., more muscle mass and less fat mass
  • Improved tolerance for exercise
  • Improved bone health
  • Improved respiratory function
  • More opportunity for social interaction

GH is usually given in the form of a daily injection, and parents are offered full training in how to do this correctly.

Should every child with PWS have GH treatment?

It should be considered for every child with PWS. The Australian PBS (Pharmaceutical Benefits Scheme) will provide subsidised treatment if your endocrinologist recommends it and has confirmed it is safe to go ahead. However, GH treatment is not compulsory, and some families decide not to have it for their child.

There are some medical reasons why treatment with GH cannot be started:

  • A significant illness in addition to the PWS
  • Severe obesity
  • Severe breathing problems
  • Untreated central and/or obstructive sleep apnoea
  • Uncontrolled diabetes

At what age should GH treatment start?

It is recommended by many specialists to start by the age of 12 months. Some specialists recommend starting as soon as a sleep study can be undertaken.

See also the PWSA article ‘Growth hormone therapy for children’.

Financial assistance

Many people in Australia with PWS are eligible for the National Disability Insurance Scheme. This funding allows the purchase of specialist supports. For early intervention assistance, see the NDIS Early Childhood Approach

A carer may be eligible for a payment. See the ‘Government Assistance’ article on this site.

Other resources

When you are ready you can view more information about infants (0-2 years) with PWS from our website.

Thank you ….

to PWSA UK for sharing their original source material.

Get in touch

We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

Contact us