When I first arrived in the UK I subscribed to a lovely little magazine called Candis  which at the time supported a charity called Bliss . Every month there was an inspirational story about a baby or babies who had surmounted incredible odds and these parents had found support through this amazing charity.

I filed the information away, and thought no more about it. Until, like the parents I had read about, I faced the ultimate parenting challenge; my baby was to be delivered by emergency caesarean section at 27 weeks gestation. A scan had shown the baby had stopped growing at 24 weeks, and whilst it should weigh a kilo, my baby was likely to weigh just 800 grams. Tiny.

When delivered, Joseph weighed just 650 grams. He was assessed as a fighter, and he  taken to the neonatal unit of our local hospital to begin his fight for life. I sat alone, in the delivery suite, and waited. Whilst I waited I was given Bliss’ Parents Information Guide to read. I read this booklet several times cover to cover. During my stay Bliss was to become my lifeline.

Bliss’ role is essentially three-fold. Firstly Bliss provides support to families, via a telephone calls, their website including a message board, and through parent volunteers. Secondly Bliss supports and funds research into premature babies and their care. Thirdly, Bliss campaigns to government on behalf of these smallest patients, ensuring they get the best possible care.

What I love is Bliss’ ethos, that the voices of babies and families must be heard. Bliss empowers me as a parent to speak, to ask, and to demand the best for babies like Joseph. I strongly believe that the quality of care babies like Joseph receive, is down to organisations like Bliss who encourage us to campaign on their behalf.

I believe strongly in Bliss, and the support they give parents, and have become a volunteer. It’s important to me to give back, and to use my experience to help others. It’s a huge comfort to me that the scary experience we went through might be of use to others. There is nothing like talking to a frightened parent at the beginning of their journey and offering help and support. Like the support I received at many points during our journey.

Possibly one of the hardest things about parenting a premature baby is the difference between what you have gone through and what your friends, family and acquaintances have experienced. Whilst 1 in 10 babies are born prematurely, so very many are not.   Most parents do not know what it is like to sit by an incubator and wait. And wait.  Also, when the baby is home, the premature baby’s parent often has a different path to tread than the parent of a term baby. Being able to share those experiences, and help one another, is important.

Recently I attended the House of Commons, with my son Joseph, now 2 and a half, to campaign for Bliss. I met with my local MP and we discussed the importance of excellence in neonatal care, and the importance of funding provision. I am hoping that this is the beginning of a productive relationship with him, and that he can help us ensure neonatal care is given an important place on the Health minister’s agenda.  I met with other parents, who share the same drive and the same ambition, to see all babies given the best opportunity to survive and to thrive.

I’ve worked in the health sector for a long time, in various ways, and I’m passionate about this area of medicine and the funding it receives. Not only because I had a premature baby, but because in many ways this area of medicine is unique.

Although a massive investment, this initial injection of funds into technology and expertise is often a one-off in a baby’s life.

Take my son for example. He received 10 weeks of care in ITU, HDU and special care. But that’s it. At 2 and a half he’s now happy and healthy. And this is the story that we tell, that with good neonatal care and sound investment by the NHS, these babies will grow and be strong and important members of our community.

For premmie support:

in Australia

In New Zealand                       In Canada

©Kylie H is an Australian, a Tasmanian now living in Manchester. She is actively engaged in educating and supporting women with child birth issues. She blogs at Not Even a Bag of Sugar which is a reference to her sons birth weight.

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