Below is a quick guide that tells you what we do and where we spend our time and money.
(1) Lactational support. We have a a wonderful lactational specialist Caitriona McCarthy ( voted lactational specialist of the year). Caitriona works as a midwife and has successfully helped many mothers to establish breastfeeding or successful expressing. If you contact us with lactational issues, we will arrange for Caitriona to either talk with you over the phone or visit you. If you are unable to pay, we can cover the cost of one visit and 2 phone calls. Contact the helpline for more information.
(2) NICU support home help. At the moment due to financial limitations, we are very restricted to whom we offer this service. This service is for parents who have exceptional circumstances and needed the support and help of a NICU nurse specialist. We use the services of a highly experienced NICU discharge nurse and mother. We arrange a home visit to ensure that you are coping well and that you are happy using any equipment that you baby may need such as a peg feeding or oxygen. At the moment this service is limited to funds and also limited to location. This is a service that would feel would need to grow and expand over the coming years.
(3)We run workshops for parents. We have run an expressing/breastfeeding for a premature baby one day course. We have a course ready on the emotional side of having a premature baby, the course will examine PND, PTSD and the whole concept of how we feel when a premature and often very sick baby. After Easter, we will have an information day on therapies. This will give parents an understanding of what the different therapies are and how they can benefit your baby. All these courses are run free of charge for parents of premature babies.
(4)We provide practical information for families. This website as well as our social media sites - facebook, twitter and youtube. We produce an information leaflet and that is distributed to the NICU's/SCBU's and health centres around Ireland. Work has begun on two major booklets, one is one expressing and breastfeeding a premature baby and the other is a NICU guide for parents. Both these booklets are intended for use while parents are in the NICU and also for the first couple of weeks at home. As parents we know what information we never got, so we know what information is important for new parents. We also produce a newsletter, our second edition should be ready by mid February.
(5)Emergency Accommodation. We are aware of the dire situation that so many parents face in Dublin when their baby is transferred up to Dublin. We have a very limited budget for emergency accommodation for parents who can't afford to stay a night or two in Dublin. We have engaged with discussions with the hospitals, HSE and TD's in relation to this matter. We have started fundraising for our own accommodation for parents. This problem has existed for a long time and realistically it will take some time for us to fundraise for accommodation.
(6)Awareness Exhibitions. We run awareness exhibitions, these exhibitions help to create awareness of prematurity in Ireland and it gives the general public an opportunity to meet with charity members. Our exhibition features the story of 40 premature babies born in Ireland, we also have a number of items from a premature baby to highlight how small these babies are. We also have an incubator kindly donated by OLOL in Drogheda.
(7) There are times when parents are in a difficult financial situation, especially during these difficult times. If we have funding for families, we try to provide clothing, food vouchers or travel vouchers. Finances are extremely limited in this area and if we are unable to help we will direct people to other voluntary and government agencies that may be able to help.
(8)We are working on a number of initiatives on policy and advocacy for change. The Charity is involved with fellow premature babies charities Bliss in the UK, Tiny Life in N. Ireland and the Social Science Research unit, in the University of London. Ireland's Inaugural benchmarking report- Positive Steps in Prematurity. White Paper presented with the EFCNI in Brussels " Call to action for Newborn Health. The charity have completed a very comprehensive survey of feeding options in the Neonatal Units around Ireland. The results of this will study will be published soon and recommendations will be issued, as well as details of practical help that the charity will provide.
(9) We run knit for the NICU schemes. We are volunteers all over the country knitting for our tiniest babies, these groups either donate directly to their nearest NICU or they give them to us and we donate them to parents or into the NICU or SCBU.
(10)Publishing. We published the biggest book on premature babies. Our book Tiny footprints tells the story of 80 families and their experience of having a premature baby in Ireland. It took months of work but it was worth to see the finished product. All the proceeds from the book will go towards the accommodation cause.
(11) We network and liaise with other premature baby charities around the world. We all join together on the 17th of November to mark World Prematurity Day. This day helps create awareness of the 12 million babies that are born too early every year and to remember the 1 million that will die.
(12)We give talks in hospitals and at conferences. We get invited to talk to new parents of premature babies in hospital from both a personnel perspective and also from the charity's perspective. We have been asked to attend and speak a number of conferences from other charities or health conferences.
(13) We make donations of equipment to hospitals. To date we have donated 4 respiratory monitors, one hospital grade breast pump, ( have 2 ready to go ), a cooling system for the NICU and we have raised €22,000 for one incubator. Our ride out for prems road Challenge, will raise a lot of money and all of this will be delegated for equipment. We are currently in discussions with a number of SCBU to ascertain what pieces of equipment they need urgently, we hope to have around €40,000 for this cause.