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Harry William Elrington was born on Saturday 2nd September 2006 @ 10:19 am weighing in at a mighty 3lb 14oz, Harry was nearly 7 weeks premature. He was immediately transferred to NICU, as you would normally expect in premature baby situations.

I was allowed to see him, but not hold him for the first 10 hours of his life. I just basically sat by the incubator looking at my perfectly formed baby boy.

I had gone back to my room to sleep for a while as I had just endured a 36-hour labour, with no pain relief and was feeling rather shattered. At 11:55 pm on Sunday evening a porter knocked on my door and said the doctors needed to see me urgently up in the NICU, my entire body went into shock and I ran upstairs without slippers or a dressing gown on. A doctor was standing by the incubator and said, "will it take long for your husband to get here, I don't think your baby is going to survive the night". He then continued to tell me that Harry was suffering from extreme Lactic Acidosis measuring in at a level 10, when fully-grown adults have a measurement of 2.

I could not take it in; this doctor had just calmly told me that Harry was going to die, whilst standing by his incubator and not looking directly into my eyes. I became what can only be described as catatonic and a nurse pushed a seat underneath me as I collapsed. My partner was out of the country and was making plans to come back home, he was called and he arrived 6 hours later carrying only a plastic bag because he had left without packing anything. I was walking up the corridor of the NICU when he burst through the door. I will never forget the look of pure desperation on his face, I told him what was happening as best I could and we went back to Harry and sat by his incubator.

My consultant came to see us both the next day and said that he was transferring Harry immediately to a specialist metabolic unit in Temple Street, Dublin. He pulled strings during the night and managed to get Harry a bed in the tiny HDU (High Dependency Unit). We arrived on Monday 4th September, as the staff nurse greeted us I felt like she knew exactly how we were feeling and I knew that if Harry was going to fight for his life, this was the only place he could do it.

Things just became a blur then, doctors, nurses, social workers, neurologists, dieticians and care workers were assigned to Harry and I. Blood was taken every 4 hours, he was being fed continuously through an NG tube and he was hooked up to every type of monitor imaginable. He was given blood transfusions; they were taking it out of him faster than he could make it. His little body was covered in bruises and pin pricks, it was heart breaking to watch him cry.

Finally the doctors confirmed that Harry was suffering from a severe mitochondrial disease. His symptoms were floppiness, low muscle tone, inability to hold his neck up, could not suck for any length of time, lazy bowel, lactic acidosis, hypoglycaemia and to top it all he had two grade 2 IVH's (Inter ventricular haemorrhages), which caused hydrocephalus (this then corrected itself after the blood debris had cleared in his ventricles). The prognosis for Harry was "guarded" a word that I now cannot stand to read or listen to anybody saying... Harry's main doctor advised us that should Harry's condition stabilise and he lived he would probably not walk or talk, wear a neck brace, be fed through a tube in his tummy, could be blind and deaf and certainly would have suffered severe brain damage (the MRI scan confirmed brain damage) from the haemorrhages and level of lactic acid in his blood.

However, Harry continued to grow and was able to see and hear, he did not move a lot, only when he was hungry and then he moved.. He slept a great deal; this was because his energy cells were not effective enough.

After being in the hospital for 7 weeks, plans were made to bring Harry home obviously with an array of equipment; oxygen, apnoea monitor, Oxi-monitor and feeding equipment. We were so looking forward to it. Then disaster struck, on the 12th October Harry needed an NG tube change and started to convulse. He stopped breathing and was dead for two minutes, he was revived, but things were never the same after that. It was the "beginning of the end" Harry was gaining weight and looking so healthy, but on the inside his body could not work fast enough to create the energy needed to keep breathing deeply enough to oxygenate his blood. He was desatting continually and was being bag and masked approx 11 times per night.

Harry's father and I decided Harry needed to be baptised, the hospital arranged a beautiful service on Saturday 4th November, Harry looked fabulous and he was wearing his new cricket tank top and linen pants. The next day Sunday 5th, we went into the hospital early and when we saw the look on Karen's face as we walked into the ward I knew that the end was nearly here. He had just had a massive episode where he died again and was again revived, Karen was just about to call us and tell us the bad news.

Our chaplain Julie sat us down and said "Harry is trying to tell us that he has had enough and wants to go, even though he loves you both so much, you have to let him go, he is so tired and is staying here for you, give him your permission to go".

We took her advice. Karen one of the sisters arranged the parent room into a bedroom for Harry, his father and I and we finally got the opportunity to sleep side by side with Harry our gorgeous little lion heart, no monitors just us and lots of cuddles. All the night staff popped in to check on us, making us tea, sandwiches, toast, anything we wanted really. Finally at 7:30am on the Monday morning, the ward sister Mary came into the room and said most definitely "Harry wanted to go home, so he is going home to see the birds before he dies". Then things started to happen, ambulances were called, garda escorts were arranged, we managed to make it through rush hour Dublin traffic in 5 minutes with sirens blazing.

As the minutes ticked away, I was looking at Harry in my arms and he was looking at me, eyes wide open. I knew then that he was going to go. I said to his dad "he is going now" and he came over and we both cuddled our little man, he died then and the ambulance stopped. The time was 9:05am Monday 6th November, he died in the ambulance parked at a crossroads called "Harold's cross" aged 65 days. Everyone in the ambulance cried, the garda were crying, everyone kissed Harry and we returned once more to the hospital where everyone was waiting for us, the ambulance crew had radioed ahead and gave the news.

We were taken into the parent's room, all of Harry's doctors and nurses were there to say goodbye. We then handed Harry over to "Pat" the pathologist who was going to perform the post mortem on Harry, later that day he would be returned to us and laid to rest in the hospital chapel. At 4pm that day, my partner and I went to see our son again, he looked absolutely perfect, Julie the chaplain said Harry had a serene beauty and she was so right, he was the most gorgeous wee man.

We arranged the cremation for the Wednesday, but we stayed with Harry for most of the time on Monday and Tuesday, the nurses on the ward took turns to be with Harry during the night so he would not be lonely.

The funeral was so hard, but it was so heart warming to know that Harry had touched everyone, the room was packed to the rooftops, all who had looked after Harry came to say their last goodbyes. Not a dry eye in the house, everyone kissed Harry and massaged his feet (he loved that, his auntie Elaine would do it continually when she was giving us a break from the hospital). It was a fitting end to a rather amazing life.

We are now waiting for the results of the post mortem to see if it was a rogue mutant gene or if I am the carrier of the mito disease, which affected Harry.

We were blessed with our little man for 65 days, in that time he loved and was loved for a lifetime. Now he is eternally gorgeous and we will definitely see him again, the memories of his smile will see us through until then. (That and the funny noise he made after sneezing)

Ps, we also have his ashes on the mantelpiece, so we can talk to him everyday.

Harry William Elrington "The lion heart"

Born on the 2nd

Christened on the 4th

Died on the 6th

Cremated on the 8th.