The Full Story
The Preterm Infants Parents Association Inc. (PIPA) is a charity which offers practical and emotional support to the families of infants born premature. Our goal is to raise awareness of premature birth and to provide understanding, support, information, encouragement and friendship to parents of preterm infants.
PIPA was formed in Brisbane in 1980 to try to offer whatever help is needed to families of premature babies. PIPA is now the peak support organisation for parents of premature babies in Queensland and no other volunteer or funded organisation in Australia exists to provide the range of services provided by PIPA.
The support which PIPA offers can start when mums become aware that their pregnancy is high risk and their baby may be born premature, continues while they have an infant in a neonatal intensive care or special care nursery and after discharge from the Neonatal nurseries’ for as many years as is necessary. Many of the children will continue to face challenges into the future and parents will continue to benefit from PIPA’s support in meeting the needs of their precious children.
PIPA is maintained entirely by volunteers, most of whom are parents of children born prematurely. It receives no government or regular corporate funding for its operations. It relies on the hard work and commitment of its volunteers to staff its operations and fundraise. The generosity of the community is also an important part of PIPA’s success.
As such PIPA is a peer to peer support group. It is all about parents helping parents. This has been PIPA’s strength and the reason why it is Australia’s longest running prem support charity.
One of the key principles that PIPA bases its activities on is friendship. Only a prem parent can really understand what another prem parent is going through. The emotions, the fears and joys of being a prem parent. PIPA encourages all new prem parents to make friends with other prems parents they meet during their journey through the neonatal nurseries. These friendships can become lifelong. Others exist only while your prem is in the nursery or the early years of your child’s life. But whatever the duration they provide the best support to help you through a difficult and challenging time. So, take the time to talk and bond with others going through the prem journey the same time as you.
PIPA also encourages new parents to attend and get involved in prem parent support meetings that are available at some neonatal nurseries and within the community. You will be surprised how good telling your story, sharing with others and even just saying things out loud feels. You help yourself and others at the same time.
PIPA is truly about giving back. It is prem parents helping prem parents.
PIPA is a registered charity and deductible gift recipient (DGR). Donations of over $2 are tax deductible
A premature baby is one born before 37 weeks gestation. In Queensland 8.7% of babies (more than 5500) are born premature each year including those born at 23 and 24 weeks and weighing less than 500g. Across Australia over 47.000 premature or sick babies will spend time in a neonatal intensive or special care nursey.
Premature babies can have significant medical challenges when they are born and there is a roller coaster ride for parents as their babies travel the up and down road of growth to what should have been their due date. As well as grieving the loss of a normal pregnancy and delivery parents can face the constant worry of not knowing whether their baby will survive and then concerns about the long-term outcomes on the health and development of their baby/ babies born too soon.
Many prems still have hurdles to overcome after their discharge from hospitals. These may include chronic lung disease, severe reflux or other gastrointestinal problems, eating problems, developmental delays, growth and language problems to name a few. Many prems will remain on the lower end of growth scales for years past the age they should have been. For a small number of prem children the hurdles remain lifetime challenges as the legacy of their early arrival is cerebral palsy, ASD (autism spectrum disorder), visual or hearing impairment. Worldwide premature birth is a leading cause of death in children under 5 and a major cause of neurological impairment (autism, intellectual impairment).
PIPA is run entirely by lay people: parents sharing their experience and knowledge learnt by caring for their own child/children born premature. It does not offer medical advice. If you have any concerns about your baby’s or child’s health or development please contact your doctor or other relevant health provider.