‘I have had calls from mums on a Saturday night; they cried for two hours solid’

When I was in hospital with Oisín, my second preterm baby, new mums were asking me loads of questions, so I knew there was nothing in Ireland for parents to turn to. So, in December 2009, when he was eight months old, I decided to set up something formal for parents in Ireland.

Facebook page

I started with a Facebook page and, to be honest, I had no interest in Facebook prior to this. I called the page Irish Premature Babies, because at 1am on a cold December morning I couldn’t think of another decent name.

I then paid for a website and domain name and was trained in how to put information on it. It wasn’t going to be an awardwinning site, but it contained information for parents of premature babies, and that was what my intention was.

My current role is chairwoman and basically I do everything that is needed. I have had to grow my IT skills, develop social media skills, learn about finance, governance, volunteers, legal obligations and data protection: the list is endless.

Unlike the big charities, I send out fundraising packs, visit mums around the country, send care packages, clean up after events, do research, write information booklets for parents, answer emails and take many phonecalls a day.

I have been doing this job for almost five and a half years. I have never received any money for the charity work I do but I jobshare with a colleague in an educational institute and we do five days on and five days off.

On these days, I leave at 7am and get home to pick up the boys from creche at about 6pm. I hardly ever take tea breaks or lunch breaks at work; instead I use that time to ring back mums or hospitals who have contacted me, or I respond to emails.

When I get home, I do homework and reading with the boys, ironing and also physiotherapy with my son Cillian, who is eight.

When the boys are asleep, I normally get back on to the laptop and will stay on until I have finished what has to be done.

During my week “off” work, I do the school run, then start tidying the house. But this is normally interrupted by work calls with people either looking for specific information or just someone to listen and to understand how helpless they feel.

Most people assume I am a paid member of staff, available 24/7. I have had calls from mums on a Saturday night, when they cried for two hours solid. And yes, I did miss my favourite TV programme, but I set up this charity to be there for parents when they are at their lowest and that is what I am doing.

Jen Crawford, our director and breastfeeding co-ordinator, has had people call to her on Christmas Day looking for a hospital-grade pump. But she is so brilliant and not only do they go home with the pump, they will also have a turkey sandwich.

Being there for someone when they need help is the best part of my job. When a mother who has reached out to tell you she feels darkness in her life and can’t deal with it, comes back after being linked to a counsellor we have paid for to say her life is so different now, that is very special.

Longitudinal study

We are doing Ireland’s first longitudinal study into the long-term effects of premature babies. This is a huge task for a small charity and will take up to 20 years to complete.

We also produced the very first book on family experiences called Tiny Footprints and we produce the only booklet and newsletter for families with premature babies.

We are also the only organisation that runs workshops for families of preterm babies, and healthcare professionals. We have donated €200,000 worth of lifesaving equipment to the units around the country; we support mothers with their breastfeeding needs; and help those who are struggling financially.

However, I do find it difficult when a new mother opens up and I know in my heart and soul that they face such a long journey ahead of them. We can do only so much for them.

I also find it particularly hard dealing with bereaved parents, because you know that nothing you can say can really ease that pain. I have seen it with my own friends who have lost babies, and no parent should ever have to experience that.

I have so many great ideas about what we could be doing to help but we just lack the funding and the time, and it really bugs me that I can’t do all the things I want for these parents.

I also hate doing the financial side of the charity as it’s like watching paint dry but thankfully Ruth, one of our directors, will be handling all this for me soon.

To know that as a group of volunteers, we are making a difference to families’ lives is the best part of my job.

See irishprematurebabies.com

Out of hours When you are a chairwoman, you don't really have time off. If a volunteer is unable to finish or start a duty, you jump in and cover it.

Volunteering is seven days a week and last summer I had my first week off for four years.

I was diagnosed with a condition called trigeminal neuralgia when my younger son was 18 months old, and I had to spend a lot of time finding the right treatment.

I have severe arthritis in my spine and hips, so I have just had my first hip replacement. I am still doing tiny bits and pieces but leaving the majority to the directors, who are just super. I have to swim four or five times a week just so I can walk about, so that is what I do to relax.

Cillian often has appointments during my week off and he also goes to the GAA club and swimming.

Time off is often spent catching up on anything I missed the previously week or getting ready for something that needs a lot of planning.

I know working up to 50 hours a week has done no favours for my health as I have given up family time and a social life but, because I set up this charity, I feel a responsibility that the volunteers and directors are not too overburdened.

It is physically and mentally draining but it is important to me to be able to help.