Mandy Daly: Helping save the lives of premature babies across Ireland

Mandy Daly

Helping save the lives of premature babies across Ireland

No first time mother-to-be expects to see the delivery suite after just 25 weeks of pregnancy—yet that’s exactly where Mandy Daly found herself in October 2006. After a pregnancy marred with complications, she suffered a placenta abruption aboard a flight, a condition that could cost the life of both mother and baby.

Around 4,500 babies are born too soon in Ireland every year, and Amelia Faith was one of them; Mandy’s daughter was delivered by emergency caesarean section. She weighed just 780 grams.

Mandy’s experience—horrific and life-changing—is unfortunately not unusual. Families with premature babies often find themselves without the support they need to navigate their journeys and the uncertain waters of years of medical follow ups; not to mention the very real chance their new born may not survive.

‘Unlike most births, I didn’t get to see or hold my daughter after her birth, and the physical and emotional emptiness that ensues following an emergency delivery was compounded by the stark reality that my daughter might not survive and might never know the loving touch of her mother in life.’ Three days after the birth, Mandy was discharged from hospital with no choice but to leave her child in the Neonatal Intensive Care Unit. She travelled the two hour commute every day to spend 14 hours sitting beside Amelia’s incubator, unable to even reach in and touch her. ‘We wouldn’t be home from the hospital more than five minutes before I’d contact them about Amelia’s condition. The heartache of leaving her each night as we travelled home to our empty house is indescribable.’

Four weeks after giving birth, Mandy was finally able to hold her daughter for the first time; she still weighed just 900 grams. ‘A moment which should be filled with joy and gratitude was tainted by the feelings of pure guilt that the pain and suffering my little girl had had to endure was entirely my fault. The irrational guilt that accompanies a preterm birth cannot be quantified.’ Three months later—following myriad life-threatening infections, eight blood transfusions and daily fear for the life of her child—Mandy and her husband were able to take Amelia home.

How many parents know that Respiratory Syncytial Virus is the thing any parent of a premature baby dreads the most during the winter? How many parents can prepare for the sensory processing problems a preterm baby can develop? The eating issues or dyspraxia? Amelia, while experiencing all of these, has done remarkably well for a baby of her gestation. But Mandy has spent the twelve years of Amelia’s life feeling unsupported and left in the dark. ‘Had I been aware of the many sleepless nights, countless bouts of illness, years of hospital appointments and early intervention therapies that lay ahead, I don’t know how I would have reacted the day I brought Amelia home.’

Her experience was life-changing and inspired her and five fellow parents of premature babies to set up the Irish Neonatal Health Alliance. The INHA has now penetrated every aspect of neonatal health in Ireland, establishing the only collaborative platform that works to reduce the incidence of preterm birth, empower parents, standardise care, and improve outcomes.

‘I certainly found inner strengths I never knew I had, but I would never in a million years want to retrace my steps again!’ She wouldn’t need to; families with preterm babies in Ireland can now have access to the support and care they need, thanks to Mandy Daly.

Mandy Daly is Director of Advocacy & Policy Making, Irish Neonatal Health Alliance (INHA).