Out of tragedy comes Jake’s Gift

Nothing is more tragic, more heartbreaking than the loss of a child and for parents who have lost a baby just prior to or shortly after birth, this loss is even more profound as all too often, you don’t have a proper chance to bond with your little one, to say goodbye.

Nothing is more tragic, more heartbreaking than the loss of a child and for parents who have lost a baby just prior to or shortly after birth, this loss is even more profound as all too often, you don’t have a proper chance to bond with your little one, to say goodbye.

One Mohill family has sought to change this by fundraising thousands of euros to purchase Cuddle Cots for hospitals throughout the country.

Just over 18 months ago, Debbie and Tony Murphy were left devastated by the loss of their beautiful baby boy, Jake, just 80 minutes after he was born in Mullingar hospital.

They had been looking forward, as any family would, to the birth of their second child but at 26 weeks they were given terrible news - their baby was “not compatible with life”.

“That’s how the doctors put it. They said our baby was not compatible with life. It is such a cold way to describe something so personal,” Debbie quietly recalls.

Jake had Edwards Syndrome, also known as Trisomy 18, a genetic disorder which has a very low rate of survival beyond birth.

“We knew then that he would have severe problems and probably wouldn’t survive. We were just so devastated, so shocked. When he was born we had him for 80 minutes and then we had to let him go,” said Debbie.

“The hardest two experiences that stick in my mind since we lost Jake was firstly, the night we had to hand him over for that trip to the mortuary and secondly, the drive home without our baby. The Cuddle Cot gives parents the choice not to have to go through either of these experiences. Their baby doesn’t have to be taken to the mortuary. They can bring them home to grieve as they prepare for the burial. That makes a huge difference.”

Cuddle Cots look just like normal Moses baskets but they are fitted with a cooling unit which allows the baby to remain with their family for a longer period of time.

Not only does this give the family a chance to bond and grieve, it also means the baby can stay with the family if there is a delay with the burial or if other family members are travelling home for the service.

“Time and control, that’s what the Cuddle Cots give families and in a situation where you’ve lost your baby and you have absolutely no control over what is happening, this gives the you back some control. It lets you decide when to say goodbye to your baby,” points out Debbie.

Following Jake’s passing, Debbie and Tony turned to other families who had experienced the same loss and while chatting on line she came across a promotion for Cuddle Cots.

“I’d never heard of them before. They have been in use in England for a few years but there was nothing like it here in Ireland,” said Debbie. “We knew this was something that was really needed here in Ireland so we decided to fundraise to purchase cots for hospitals.”

Through Feileacain (Stillbirth and Neonatal Death Association of Ireland), Debbie and Tony were able to start the process of raising €2,500 for each of a planned 25 Cuddle Cots - 22 of which were to be placed in hospitals throughout the country and three floating units to be kept in Co Leitrim, Co Cork and Co Dublin for use on request.

This amazing family started by writing letters to the various hospitals about the Cuddle Cots.

“Nobody had ever heard of them until we sent them letters explaining what the Cuddle Cots were. Some of the hospitals were slow to agree to them but others just jumped at the chance,” said Debbie.

Their bid to buy the Cuddle Cots was also given a substantial boost by Carrick-on-Shannon businessman, Pat Mulvey from Mulvey’s Toymaster and Nursery. He heard about their efforts to fundraise and along with one of his suppliers, the Dublin based, Baby Elegance, agreed to provide the Moses baskets needed to house the units.

With the support of Feileacain, family and friends, Debbie and Tony began fundraising in earnest with several events including the Ladies Mini Marathon, a quiz night and some very special fundraising by the students of Dangan NS.

All their hard work quickly paid off and in August 2012, Debbie, Tony and Rebecca presented the first of the Cuddle Cots to Mullingar Hospital, on the first anniversary of the loss of little Jake. The special Cuddle Cot has been named in honour of Jake and it has already made a huge difference to a number of families.

“It was important for us to make that first presentation to Mullingar Hospital because that’s where Jake was born. Since then we’ve been told just how big a difference it, and the other Cuddle Cots we have been fundraising for, have made to so many families,” acknowledges Debbie.

“The death of a baby is something that nobody wants to talk about but it is something which affects so many families here every year and the impact is something you carry with you for life. For us, Jake was with us for such a short period of time, but he’s made such a huge mark in our lives. For so long after he died I kept thinking ‘why?’; ‘why us?’, ‘why Jake?’. People kept saying “there is a reason for everything” and while we never wanted to lose Jake, now when we look back we can say that his life, no matter how short, has made a difference to not only us, but so many other families. That makes his death a little easier to bear.”

Fundraising is still ongoing to purchase the final six cots and Debbie, Tony and Rebecca say they are just so grateful to everyone who has helped so far, especially Aura Leitrim Leisure; DPS Print, Murtaghs Bar & Restaurant, Carrick Cineplex, the Courtyard Kitchen, Holistic Touch, Padraig Glancy, Eden Flowers, Vistamed, Reverb Studios, Shannonside Northern Sound and Brendan Farrell, Carrick Rugby Club, Mulveys Toystmaster and Nursery and Baby Elegance, The Landmark Hotel and The Communication Workers Union.

“We’d also like to say a big thank you to our families and friends, to all our sponsors and supporters, too many to mention by name but they know who they are,” added Debbie.

For anyone looking for information on the Trisomy condition please contact SOFT Ireland on 1800 213 218 or info@softireland.com, or you can also check out the website www.softireland.com.

To get in touch with Feileacain (Stillbirth and Neonatal Death Association of Ireland) phone 085 2496464 or see the website www.feileacain.ie.

Donations are still being collected for the Cuddle Cots, if you would like to help then you can do so via www.feileacain.ie - just make a donation and add the reference Jake’s Gift when making a donation.