Notices

On 29 February 1996 Jack Irwin was born – a bonny bouncy baby. Two days later he suffered some invasive trauma in the hospital’s nursery.

While history does not reveal the immediate aftermath of this drama, it is probable that he died and was resuscitated. Certainly from that moment on, Jack could not swallow and was probably blind and deaf. His parent’s dreams were shattered and the heartbreaking task of keeping Jack alive began.

The senior pediatrician in the hospital was brutal but honest.

Asked for a route map of care for Jack once he left their intensive care unit, it was made clear that there were simply no services in Ireland available to a baby like Jack. He cautioned that Jack’s needs would threaten the marriage and certainly damage the childhood of his healthy brothers and sister. To escape this trap, he advised the only way out was to get him admitted to one of the children’s hospitals. Then and only then would the State have to take responsibility for him.

Spine chilling advice that resolved Jack’s parents to take action.

Never again would any Irish family have to face such a horror.

Jack lived for 22 months – a desperate and painful life. A mix of drugs, physio, postural drainage, seizures, reflux operations, gastrostomy and suctioning. The only saving grace was that he was cosy and warm and nursed around the clock by a dedicated band of five housewives from the neighbourhood.

His short life showed his parents the ideal way in which little children like Jack can be nursed. From their experience evolved the home respite care that has now been offered to over 1500 children and their families all over Ireland since 1997.

Apart from the obvious trauma and exhaustion parents of these babies suffer, they then have to cope with the bureaucratic demands of the State.

Nothing is offered willingly, rather it has to be fought and begged for.

The primary aim of the Health Service Executive is to protect budgets at all costs and never to set precedents.

It is also apparent that the more modest the circumstances of the family, the more uncaring the attitude of many of the officers of the State.

This leads to a situation where the Jack & Jill Foundation not only has to raise funding of up to €3.6 million per annum but must act as advocate for it’s families. Securing a carer’s allowance, a medical card, correct housing, special equipment or a primary medical certificate. These are all due to eligible children but very often are delayed until the intervention of the Jack & Jill Foundation.

click here to visit the Jack and Jill website