SUPPORT

from the NICU to beyond

We understand how overwhelming a neonatal journey can be - if your baby was born prematurely or needs the care of the NICU, have a read through the list below. These resources include assistance from New Zealand government agencies, organisations and charities, and (most importantly!) local NZ and international support groups. Getting the right help during baby's time in the hospital is so important, but the first few months after baby comes home can be quite isolating, and you might still need support in the years ahead.

Have a scroll through the whole page, or click a link below to skip directly to the section you need:


SUPPORT FOR FAMILIES - NEW ZEALAND 

The Neonatal Trust: Providing support to families of premature and sick full term babies as they make their journey through neonatal care, the transition home, and onwards. Through fundraising and donations The Neonatal Trust also purchase beneficial equipment and maintain the parent's rooms in units nationwide.

NZ NICU, SCBU and NNU Parents Support Group (Facebook): A closed group of about 3,000 past and present NICU parents. The group is a safe place to share your experiences, ask for advice and connect with others who understand the challenges of NICU life. All prospective group members are screened - please check your 'message requests' once you've asked to join.

Preemie, NICU and SCBU Dads NZ (Facebook): A private group, specifically for fathers to discuss their experiences and provide advice and support.

Family Support for NICU, SCBU and NNU Babies NZ (Facebook): A group for family and friends supporting parents with NICU/SUBU/NNU babies in New Zealand. This is a safe space to ask questions and seek advice about how to support your loved ones through this hard time.

Care for Families: A non-profit charity, started by a mum of 3 miracle babies which provide free packs for all premature babies. Care for Families also send hundreds of extra packs directly to neonatal units throughout New Zealand for the Christmas holidays. To request a pack fill in the referral form on the website.

Multiples: A parent-led support network, providing networking, education, support and advocacy for members. Multiples families have access to special discounts, hire equipment, as well as playgroups and social events organised through the local clubs.

Perinatal Anxiety and Depression Aotearoa: Ensuring families have access to information and support, PADA's website covers all perinatal conditions including PTSD, Postnatal Depression and depression in fathers. In the Support section you can find a comprehensive list for organisations in your region, with contact numbers and website links.

Mothers Helpers: With a focus on Antenatal and Postnatal Depression, Mothers Helpers aim to prevent the occurrence, longevity and severity of Postnatal Depression. They run a Perinatal Depression Recovery Course, as well as assisting with finding affordable/free support, counselling and practical help for mums.

My Birth Story: Insights, advice, internal and external resources as well as real stories from Kiwis who have had negative or traumatic birth experiences. The website is a place where you can start to process your experience and begin to heal.

SANDS: Support for parents and family who have experienced the loss of a pregnancy, baby or infant. Sands is run by parent volunteers with over 25 groups/contacts throughout New Zealand, and promote understanding and awareness along with providing support packs to bereaved parents.


GOVERNMENT ASSISTANCE - NEW ZEALAND

Travel Assistance - Ministry of Health: Many NICU parents are entitled to Travel Assistance, a payment which helps to help cover the costs of mileage, public transport, taxis etc. The form needs to be signed by your nurse every time you visit the hospital, so see the support worker as soon as possible to get the paperwork.

Pre-Term Baby Payments - Employment New Zealand: If you are eligible for Paid Parental Leave and your baby is born early (before 37 weeks), you should be able to get the Preterm Baby Payment for up to 13 continuous weeks (until baby reaches 37 weeks gestation). This is in addition to the 26 weeks of Paid Parental Leave, and is paid at the same rate. 

Home Help for Multiples - WINZ: If you are expecting or adopting twins (you must already have a child under the age of 5), or have triplets/higher order multiples, then you should be eligible for 12 months of home help. It's not means tested and is granted from the day the babies come home from the hospital, or date of birth if born at home.


BEYOND THE NICU - NEW ZEALAND

The Neonatal Trust's Playgroups & Coffee Groups: giving you the chance to meet with other NICU/SCBU families. For young prems, some playgroup sessions are run with an Occupational Therapist for extra support and advice about your baby's development. Currently held in Auckland, Waikato, Tauranga, Hawkes Bay, Wellington and Dunedin - see their website and facebook page for the latest updates.

Starting Solids - Starship/Auckland DHB Guidelines: Are you close to starting your premature baby on solid foods? These feeding guidelines were created by the Auckland DHB. It includes advice on developmental milestones and cues, first foods and more info about progressing to solids.

Growth Charts: for babies from birth to age 5, as used in the Well Child/Tamariki Ora Healthbook. Remember to plot 2 lines - for baby's actual and corrected ages. For premature babies (born from 32 weeks), the A3 Size charts includes separate pre-term Weight and Head Circumference charts.

WHO Growth Charts: for children aged 5 and up (the Well Child/Tamariki Ora charts stop at age 5), commonly used by paediatricians. WHO charts are helpful for continuing to track the growth of smaller children that have feeding difficulties or are taking longer to "catch up" to their peers.

Raising Premature Babies NZ (Facebook): A closed discussion forum for families who have had premature babies. This is a place to share the experiences, stories, feelings and insights of raising a baby who was born too early, and where parents can search for advice.

Crying Over Spilt Milk: An incredibly helpful website with support for parents whose baby is showing signs of reflux. Gastric Reflux Support Network NZ provides coping techniques and information to caregivers of infants with reflux and associated conditions.

Tube Feeding NZ (Facebook): A support group for families with, or that have had, a tube fed child. Health professionals are also welcome to join the group to offer help and advice.

Tubie Love: Tube Feeding products, lovingly hand made in New Zealand. Reusable G/J-tube pads, Feeding Belts, Medical Syringe Pouches and more can be purchased via their Etsy store.


INTERNATIONAL

March of Dimes: Fighting for the health of all mothers and babies. A comprehensive amount of information, including pregnancy complications, preterm labour and birth, the NICU, health conditions, and dealing with loss and grief.

Hand to Hold: Based in Texas, Hand to Hold provides support before, during and after a NICU stay to help ensure all NICU families thrive. Lots of personal stories and information within their Blog and Podcast sections.

Preeclampsia Foundation: Information for mothers and their families. The Foundation's purpose is to improve the outcomes of hypertensive disorders of pregnancy by educating, supporting and engaging the community, improving healthcare practices, and finding a cure.


If you know of another organisation or resource we should add to the list, please let us know! Fill in our Contact Form or email stephanie@smallbabies.co.nz