We are raising funds in the name of Daniel Monaghan for Childrens Heartbeat Trust and the Paediatric Intensive Care Unit (PICU) in the Royal Victoria Hospital in Belfast.

This is our story:

In June 2013 we found out we were having our second child and we were delighted at the 20 week scan to be told it was a boy.  I sailed through the pregnancy just like my first one with no problems at all.

On the 25th March last year we welcomed our beautiful baby boy Daniel into the world, he was just gorgeous!!  When he was delivered everything was ok for a few moments and then the nurse took him to one side as he was cold and turning blue.  We were beside ourselves with worry and when the doctor came to speak with us he confirmed that Daniel had Down Syndrome.  He also said it was likely that Daniel would have a heart condition.  Daniel was then taken to Neo Natal and placed into an incubator where he remained for a week.  We then attended an appointment in the Royal Victoria for an Echo scan to check his heart.  It was confirmed that Daniel had a heart condition known as a complete AVSD and it was large.  He would need open heart surgery but he was too young and it would be done in London when he would be approximately 6 months old.   

We returned home and on the 12th May Daniel struggled to breathe, swallow and suck at the same time resulting in him not feeding and vomiting.  He was admitted to Clark Clinic In The Royal where an NG feeding tube was passed.  We got back home and on Father's Day he started vomiting again and had breathing difficulties.  We rushed to Craigavon where he was admitted and given oxygen, nebulisers and medicine to help him.  As there was no beds available in the Royal we had a 48hr wait in Craigavon.  The doctors and nurses in Craigavon were fantastic and stayed by his side the whole time.  Finally we arrived at the Royal by ambulance.  At this stage Daniel was really struggling and tired so they decided to put him on a life support machine to give him a rest and to take control.

Although he was younger than usual the doctors booked him in for his heart surgery, but a few days before we were due to fly Daniel contracted an infection in his bowel called necrotising enterocolitis N.E.C for short.  This is a life threatening infection usually found in babies that are born prematurely.  We were told Daniel had a 50/50 chance of surviving this and would need surgery as soon as possible.  They were not sure his heart would be strong enough for the anaesthetic and if they did not operate the N.E.C would most likely be fatal anyway.  He went for the operation and our wee fighter came out the other side, sick but still alive.  

We eventually got an air ambulance to London, we arrived to the Evelina Childrens hospital by blue light ambulance and were admitted to PICU.  The doctors ran bloods etc and found that Daniels infection markers were on the rise again, again the heart surgery was delayed until they found the source of the infection.  It turned out his bowel had perforated and he had to be rushed to theatre once more.  He came through this major operation again and the surgeons thought it best for Daniel to have an Ileostomy (opening from the small intestine to the abdominal wall) resulting in a stoma bag being fitted.  A few days passed and just when we thought we had turned that corner his bowel perforated for a second time, we were utterly devastated, again our wee man had to be rushed to theatre where he had to have more bowel tissue removed and they moved the Ileostomy further up.  The bottom line was his bowel would never have got better without his heart being fixed and he was never clinically well enough to go for open heart surgery.  It was a vicious circle.  Finally they seized their opportunity on the 7th August still warning us all the time that he might not make it.  Our champ was not going down without a fight and came through once again.  He was very poorly after the heart operation but after a few days you could see a massive change in him and for the first time in a couple of months he was taken off life support and put onto a machine to keep pressure on his airways known as CPAP to help him with his breathing. 

A week later and we were back in Belfast, after a few weeks the doctors thought it was time to rejoin his Ileostomy and take his stoma bag away as the skin around the stoma was very inflamed and sore. Daniel was prepared for surgery once more and we eagerly awaited his return.  He was quite sick when he came back and within 48hrs we were back on life support and told that he had septicemia and was a very sick wee boy.  The doctors tested him for meningitis and thankfully it was negative.  They gave him a cocktail of very strong antibiotics and he fought the infection and for a fifth time pulled through.

We were discharged the night after Halloween and although we have had a few chest infections where we have been admitted we have been home for the most part and thankfully our wee man is doing well.

We would like to thank the nurses, doctors, consultants, surgeons and anyone who helped save our precious boy without their help it would definitely have been a different story with Daniel.  It's not until you see what actually goes on in these special units and wards that you see the passion these people have and how busy they are.  We really feel that they are all angels and go well beyond the call of duty for each and every patient they treat.  We really do not realise how lucky we are having the NHS and all the charities out there that are available for financial and moral support and I suppose it is something we sometimes take for granted.

This is why we would like to give something back by fundraising for the PICU unit and the Children's Heartbeat Trust so that other families can get the care and support that we received.  If you could spare even just a few pounds it really doesn't matter how small it all adds up, we truly would be most grateful.  You can also text DANY64 with the amount you wish to donate to 70070.


Thank you for reading our story.