The people who are behind Irish Premature Babies are ordinary parents who are doing this on a voluntary basis because we all passionately believe in making things better for parents when they have a premature baby in Ireland. We all come from diverse backgrounds, are based in different parts of Ireland but we have one aspect in common, we all have experience of having a premature baby and we feel we know what support/information/help parents need.
We hope what we are doing is beneficial for parents, and that we are representing your welfare. Our aim is to be open and honest in our activities and we hope if you feel we should be focusing on a specific area, or that we could do something better, we are always open to your feedback.
This update section is to inform you of what we are doing and to show you some of our intentions in the coming weeks and months. We will be updating this section every month or so, so if you want to know what we are doing , read this section. If you want to get involved in any aspect, whether it's fundraising, becoming a volunteer or doing some work for the organisation we would be delighted to hear from you.
A video detailing some of our events in 2011
1. The breastfeeding programme introduced by IPB is going from strength to strength. Numbers are increasing weekly and we now have a waiting list for pumps. It has been so busy, which means mums now know that we offer a rental scheme. The pumps are €40 per month which is a much smaller amount and it makes it more accessible to people who are struggling financially. There is also a big increase in the amount of mothers linking in for professional lactation support. The charity will pay for this support when needed. We have also purchased 5 more breast pumps for the neonatal units around the country.
2. Thanks to Anne Ryan and Lorraine Mc Carthy for organising a great family day out in Dublin Zoo in September 2013. The girls did an amazing job and their attention to detail was really impressive. We were at full capacity despite the rain and I think everybody had a great time including all the volunteers to join in on the day. We will definitely run this again this year and hopefully in a few more locations.
3. Crumlin hospital and doing up three parent rooms was an amazing experience in 2013. We wanted to create a little home from home environment for parents whose babies/children are in the hospital long term. We also had sacks of toys donated by parents and items bought by IPB especially for children unable to leave their bed. It was an amazing experience and we meet loads of fabulous staff and parents.
4. All recent workshops have gone really well, the feedback from parents has been really positive and they were really grateful of the work the charity is doing. The first aid course was really good. Siobhan who gives the course is paediatric nurse and she has a fabulous sense of humour and delivers some of the best one liners you will ever hear. The breastfeeding workshops have had members of the other breastfeeding groups like Cuidiu and La leche league in attendance which is fabulous and shows an increased awareness of the problems faced by mums. This year we are extending our workshops to sensory, education issues and more counselling ones.
5. We are getting loads of referrals from doctors/nurses/social workers and PHN who are reaching out to IPB to help the parents they are looking after. There is an alarming level of poverty amongst some of the prem parents we are currently working with. Some of the feedback from professional is very upsetting-new mothers who have not eaten for over a day as they have no money for food. No heating in overcrowded accommodation. Mothers missing hospital apts as they had no means of travelling to hospitals. Mothers not having money for basics like cots/prams. We are working touching base with other support networks in the community as we can only do so much.
7. We have published the very first booklet for prem parents on Rights and Entitlements the booklet is available online and will be distributed to all the units in the country.
8. Sarah Keogh from Eatwell has put together a great little booklet on weaning preterm babies. She has had several other professionals check the booklet and they are all happy with it. The booklet is printed and will also be distributed to the units in the country.
9. The Ride out for Prems documentary was show cased in the Rotunda hospital and was a fabulous launch. The bikers also appeared on the Late Late show on the bikes., You know you have made it when you are on the late late !!!
10. We had some additions to the volunteers in the charity and some retiree’s . Voluntary work can be so rewarding but time consuming. As always we are grateful in that we seem to be able to get volunteers to join us.
11. We have a new board of directors commencing in February 2014, it’s always good to bring new people with new experiences and opinions to a board, it allows for much better brain storming sessions. We have a very talented and interesting board this time.
12. Our fundraising is going well, for the first time ever we sold out of Christmas cards, we had a new lady looking after these this year and a new courier company, we had plenty of happy customers this year. We really appreciate all the support.
13. Demands for services have increased so much for the last year. We started off with a certain agenda as a charity. We now help parents with clothes, emergency accommodation, travel expenses, medical expenses, counselling costs, workshops, lactation costs, OT assessments for children. We are having to change the way we support parents to meet the huge extra strain of our resources. As always it’s our privilege to be able to help both families and the NICU’s. To date we have donated over €120, 000 to all the NICU’s around Ireland.
We published our very first book called “Tiny Footprints”. It tells the story of 80 families who have been affected by premature birth in Ireland. Sales are going well and all the proceeds from the book will go towards the accommodation and research centre.
We have moved into our own official office and have our own landline number.
We ran a course on expressing & breastfeeding for premature babies, it was a great course and we all learnt loads.
We will in the middle of setting up busom buddies, these are buddies that will support mothers who are expressing milk or trying to breastfeed their premature baby. Meet & Greet Sessions. We have expanded nationwide with the meet and greet sessions. The “knit for the NICU” project is going really well and we have loads of amazing little outfits. Many of the items were donated in the Christmas hampers. We donated hampers to many of the NICU’s/SCBU’s around Ireland for Christmas.
We are published our first newsletter called “Early Addition”.
We are in the middle of planning a parachute jump and the road warriors Ride out for Prems. We hope to raise lots of funding from these events.
We have donated a number of MR10’s machines to SCBU’s around the country. We have raised €10,000 towards an incubator and have donated some hospital grade breast-pumps.
We are produced about 25 videos, you can view them on YouTube.
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 has 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.
The shop on the website is going really well. Christmas card sales were up on last year and with the sales of the book, the fundraising team were kept really busy.
We sponsored a new website http://www.monoamniotictwinsireland.ie
/ This is an only Irish site that deals with mono twins. Our charity are proud to be sponsors of this site.
Meet & Greet Sessions. We are expanding nationwide with the meet and greet sessions.
The “knit for the NICU” project is going really well and we have loads of amazing little outfits.
The Passion for Prems fashion show was a great success, we raised over €10,000.
We did a Rev up Tour around Ireland with Sean Brennan on a harley and three members of the charity team. It was a great way to meet fellow parents and staff members in the NICU’s/SCBU’s.
Our facebook page is going really well, we have over 5,000 fans on it. We have had a few good competitions on the page. We also post the latest medical research on the page.
We are working on lots of new projects at the moment.
We all did the Dublin mini marathon with over 120 other mums and one or two dads, it was a great day out.
We have updated and reprinted our leaflet. We have a breastfeeding booklet and a NICU booklet in the pipeline and work has started on both of them.
We are working on a book at the moment. The book will highlight the stories of several parents from around the country.
We have donated a number of MR10’s machines to SCBU’s around the country.
We are produced about 25 video’s , you can view them on YouTube.
We are focusing on the problem of accommodation for parents whose babies are transferred up to Dublin. We have started fundraising for this.
We have linked up with a number of businesses such as Mothercare Ireland, Irish Breeze and Nana Beens. Each of these companies will be supporting our charity in different ways.
We have 2 new little Irish Premature Babies and another on the way, both mums went to term, which is fabulous. We have two new members join the committee.
We became an official charity CHY19532 and also are set up a company limited by guarantee without a share capital. Many months of hard work paid off.
Nicky Byrne from Westlife appeared on Celebrity Winning Streak in December 2010 and won €30,000 for Irish Premature Babies. Several parents and a few from the group attended the show and they all had an amazing time. This money will make a huge difference to our organisation, we will be forever grateful to Nicky.
We started a pilot project at Christmas called the “Tots & Treats”. We brought hampers for parent & babies to Holles St, Rotunda, Coombe and Temple Street hospitals. We wanted to bring a little Christmas joy to parents whose little babies or children would be staying in hospital over Christmas. We want to try expand this around the country for next year.
EFCNI . One of our members attended the European meeting of premature baby groups this November in Germany. It was the first time Ireland was represented at the parents’ conference and our representative Mandy made lots of great contacts.
Meet & Greet Sessions. We are expanding nationwide with the meet and greet sessions. Galway and Mayo will be included for sessions now.
We started a “knit for the NICU” project. We have a number of people from around the country, knitting for premature babies.
Discounts & Affiliation cards. The Affiliation cards are going well and business are approaching us to offer discounts for parents. We have a co-ordinator who just looks after this scheme now.
Christmas Cards. Our cards were a great success and we will continue to sell the cards this year.
International Prematurity Awareness Day 17th of November 2010. We had a tree planting ceremony in St. Stephen’s Green and a balloon release outside the Mansion House. We have pink/blue balloons and white balloons with names of little babies who have passed away. We had a small exhibition in Stephen’s Green shopping centre.
We had an awareness exhibition in Swords in November. It was a great success and we were able to meet loads of parents and it was a great opportunity to create awareness. We will be doing a few more exhibitions this year.
We are in the middle of organising our first fundraising activity for 2011. We are having a Passion for Prems fashion show in the Grand Hotel, Malahide. We have a brilliant night arranged for those attending. All the proceeds will go towards the Coombe, Rotunda and Holles St NICU.
We received a publishing grant from the Citizens Information Bureau for over €2000, this will really help with publishing important information for parents about their rights and entitlements.
Discussion forum. Our forum is up and running and it appears to be going very well. We have several hundred registered users.
We have some new sections on the website- A shop to raise funds, a bereavement section for families , section of kangaroo care, a video prem journey section. The website is very popular and we get several thousand hits a week from over 70 countries, which is amazing.
New members: Our workload is growing all the time and a few new mums have kindly agreed to come onboard and help us out with some work. We have 5 new parents to join the organisation in an official capacity. Three will be working in the fundraising section, one in housing and one in the discount scheme.
We will be publishing our next lot of accounts online soon.
Official Launch. Our official launch in the pillar room of the Rotunda was a great success. The exhibition featuring 40 families were very well received and really helped to create awareness of prematurity in Ireland. We were honoured by numerous special guests and we got fantastic media coverage for the day. Many parents throughout the country have taken part in local media coverage which again is great to highlight the problems faced by parents.
EFCNI . One of our members will be attending the European meeting of premature baby groups this November in Germany. The meeting will be facilitated by the EFCNI.
Meet & Greet Sessions. We are expanding nationwide with the meet and greet sessions. Details will be on the website Discounts & Affiliation cards The Affiliation cards are going well and business are approaching us to offer discounts for parents.
Conferences. We are attending numerous conferences throughout the country promoting and creating awareness of our organisation. It has been great to meet with different organisations and medical personnel.
Christmas Cards. We are selling Christmas cards this year to help raise funding. We have set up a shop section on the website so people will be able to buy the cards on line.
International Prematurity Awareness Day 17th of November 2010. We are working on a project at the moment to highlight the day in Ireland.
Buddy System Our ‘Buddy System is going really well and we have parents contacting us to both find support and also volunteer as a buddy. You can now access a buddy via email which might be easier for parents while their baby is in the NICU.
Upgrading on the website: Work is in progress on upgrading the website and putting a discussion forum on the website so parents can communicate with each other
Discussion forum Our Discussion forum will be ready soon this month. We hope it will really benefit parents so they can communicate with each other. Our website will be upgraded to facilitate the forum.
Fundraising: A number of people recently done the Cork mini marathon for Irish Premature Babies and we have some people doing the Dublin City Marathon for us as well. We will be bag packing in Lusk on the 22 and 23 of October, hopefully we will raise some funds for the organisation.
Charity Status : We hope to hear back fairly shortly in relation to our charity status.
New members: Our workload is growing all the time and a few new mums have kindly agreed to come onboard and help us out with some work.
First official fundraising event: Our first official fundraising event at Shelbourne Park went really well. We will be liaising with the hospitals soon so we can work together on a pilot project to see how best we can support parents in need.
Support: As usual when we ask for help some amazing people come to our rescue, we have some accountants, solicitors and auditors that are going to help us on a voluntary basis. We have had fanastic graphic designers help us with our video and exhibition, with their professional help we would be lost.
Feeding Survey. We have set up a survey designed to look at parent’s experience of feeding either premature or ill babies in Ireland. We are working with a number of agencies such as the BFHI that will use the data to highlight areas that need more support and look at way to provides services to parents around the country. The results of the survey will be published on the website. We will be doing more surveys in the coming months.
Official Launch. We will be having our official launch in September. The Friends of the Rotunda are allowing us to use their Pillar Room for this event. They have been an amazing support to Irish Premature Babies. We will also be holding an exhibition at the launch to highlight and help create awareness of prematurity in Ireland. Our patron will be present at the launch and we will be doing a national media campaign.
Meet & Greet Sessions. We had our first official meet and greet session in Dublin in May 2010 and one in Cork in April and have another one in July, staff from CUH will be attending the meeting in Cork to help with any queries or problems parents may have.
Discounts & Affiliation cards. The Affiliation cards are going well and business are approaching us to offer discounts for parents. We have parents working on securing more discounts for parents.
EFCNI. As we are affiliated to EFCNI (the European Foundation for the Care of Newborn Infants)we hope to attend the next conference run by the EFCNI to ensure that Irish Parents are represented at European Level.
Contact with hospitals. We are continuing to forge links with hospitals in Ireland. We have met with representatives from many hospitals and have been asked to represent a parents perspective in working groups such as birth matters in OLOL. We are also working with social workers, physiotherapists, public health nurses, midwives, and chaplains.
Phone Number. We now have our phone number, we have a 24 hour policy of dealing with all queries, either by mail or phone. We can be reached by phone during office hours and available by text out of office hours.
International Prematurity Awareness Day 17th of November 2010. We intend to mark this day to help highlight the issues associated with prematurity.
Awareness project. We have produced our first video to help create awareness of prematurity and the issues faced by parents. It has been very well received and we were are grateful to all the parents who submitted photographs to be used for the project.
Buddy System. Our ‘Buddy System' is going really well and we have parents contacting us to both find support and also volunteer as a buddy.
Fundraising for hospitals. Parents from all over Ireland participated in the Dublin City Mini Marathon in June, we hope that the NICU’s & SCBU’s around Ireland received valuable funding for the units. We plan to promote and support any local incentives by parents who are interested in fundraising for their NICU/ SCBU. The NICU/SCBU need people from the around the country to volunteer their time to fundraise for their own unit. We plan to do a fundraising venture for the hospitals in the coming months.
Fundraising for Irish Premature Babies group. Our first official fundraising event will take place on Saturday the 14th of August 2010. We are having a night out at the dogs at Shelbourne Park. We have set up a separate Facebook page “Irish Premature Babies Night Out at the Dogs”. All funds from the night will be used to provide services for parents in need. Tickets for the night can be purchased here online on the website.
Becoming a charity. We are still in the process of applying for charity status, we hope to receive our charity status soon. We have received a number of offers of assistance from professional people who have kindly given us their free time to help us with this application.
Discussion forum. Our Discussion forum will be ready soon this month. We hope it will really benefit parents so they can communicate with each other. Our website will be upgraded to facilitate the forum.
Funding. We have applied for some local funding to help with the costs of the organisations. We have put a donation button on the facebook and website. As the parents are still primarily funding the organisation we do hope that we receive some financial support soon.
Corporate Funding. Irish Premature Babies funded all the leaflets and posters in the NICU. We are looking to get corporate sponsorship to produce booklets for parents while still in the NICU and also to produce booklets on expressing & breastfeeding premature babies.
Online presence We have set up this website, a Facebook page, a Facebook cause, and a Twitter account so we can promote the organisation and so we can connect with fellow families of preterm babies.
Printed material We have produced and distributed a leaflet and posters about our organisation. We have sent letters of introduction to every NICU and SCBU in the country. We are in the process of sending supplies of both the leaflets and posters for parents who are and who will be in the units. If you would like to see what the leaflet is like just click here Leaflet for Irish Premature Babies
Discounts & Affiliation cards We have negotiated discounts for parents on items such as breast pumps, premature baby clothing, photography sessions, and general baby accessories. We have affiliation cards almost ready so parents can utilise these discounts. There is no charge for these cards.
EFCNI We are affiliated to EFCNI (the European Foundation for the Care of Newborn Infants). They are working with other premature baby associations worldwide to increase awareness of prematurity.
Links with peer organisations We have developed close links with a number of other premature baby organisations across the globe. We will be doing a couple of joint ventures with some of these organisations in the coming months.
Contact with hospitals We have met and spoken with staff from several hospitals in Ireland and are fostering a very positive relationship with them. We have been asked to give our advice and input on a number of projects that individual hospitals have on their agenda.
Articles from medical experts A number of medical professionals have given us articles for our website and we have engaged some Irish experts to write some articles on issues relating to prematurity.
Awareness project We are embarking upon a project of our own called ‘Awareness Project’. We are in the middle of producing a video for this and should be ready soon. We will also be doing an exhibition, which will also be our official launch.
Buddy System Our ‘Buddy System’ has proven to be extremely popular and we are getting so many requests for both the email and phone support. Despite having a large number of volunteers around Ireland we will still continue to recruit new additions to this invaluable service. We have a number of parents from diffferent countries involved now which is brilliant.
Fundraising for hospitals We have set up a fundraising page on this website. We have been actively encouraging parents to support the different NICU’s/SCBU’s around Ireland for the mini marathon. We will promote local initiatives of fundraising throughout Ireland on our website and Facebook page. We are in the process of setting up a dedicated fundraising team to look at fundraising for the units.
Fundraising for Irish Premature Babies group We have plans to do a fundraising event for our organisation to cover costs. At the moment we are self funding and are relying on the parents in Irish Premature Babies to meet all expenses. We will be putting a donate button on our site so if people want to contribute to our organisation, they can. We also want to look at providing access to services for parents who cannot afford to pay, such as lactation support, counselling costs, or financial support especially to parents who are transferred to Dublin and have to pay for accommodation etc while their baby is in the NICU.
Becoming a charity We are in the process of applying for charity status, the organisation is growing at such a fast rate we have to develop the group so we can achieve our objectives.
Discussion forum We will be putting a forum on the website so people can really connect with other parents.