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Did you know during pregnancy that Harry had problems?

The only thing was an enlarged ventricle in the brain, it was borderline abnormal. This was detected at my 20-week scan, but generally if there were only one anomaly it would not be indicative of a serious problem. Usually 2 or 3 anomalies are required to cause concern. My consultant was not overly concerned and it did not grow any larger during the course of the pregnancy. I suffered no morning sickness, only fatigue which is completely normal. With hindsight, Harry did not make sudden movements in the womb, just very gentle ones, like he was doing a leisurely walk in the park instead of a 100-metre dash.. He also had the hiccups continually!

 

When Harry was born did he look different?

Yes a wee bit, he was very skinny; he looked like a tiny skinned hamster. His head was slightly bigger at the back than normal and he had a tiny nose. I still smile at the sight of his tiny, tiny nose in his first-born pictures. Nevertheless, he was stunningly beautiful and it was a miracle that he survived at all in the womb, with everything he had to contend with whilst trying to grow.

 

Was Harry in pain with his disease?

It is a horrific and terrifying disease and Harry mercifully did not live long enough to endure the type of pain that could occur with this strain of Mito disease. I was with him everyday and he was certainly not in any pain, other than the normal windy pops. Harry was in pain when all the blood for tests were being drawn, however it was very temporary and he always had me on hand to cuddle him better. Harry rarely cried and if he did it would be because he was hungry.

 

How did you cope being at the hospital everyday knowing your child was critically ill?

Ask the same question to any mother and they would say. "You can see nothing else in the entire world other than your child, the need to be with them is so great and so utterly compelling you would rather die, than not be with them". Harry became my universe and coping was as natural as breathing.

 

Why did you turn the monitors off instead of ventilating Harry?

Harry's disease was progressive, putting him on a ventilator was not a temporary measure and he would never be able to breath unaided. Harry's dad and I made that decision on Harry's behalf, lying in a hospital bed, unable to cry or make his Harry noises was not a fitting end for our gorgeous child. Instead he died peacefully and with dignity whilst being cuddled and kissed by the people who most loved him in the world.

Of course there are always feelings of guilt when at the lowest ebb and I often talk to Harry's dad about it, should we of ventilated and hoped that it was just an episode and he would grow out of it? Did we have the right to make that decision for Harry? These feelings and questions will always be a source of pain for us both. However, was it the right decision, absolutely?

 

What will you do if you cannot have another child?

So be it. I was meant to have only Harry. For that I have been blessed, there are some women who never get the opportunity to experience giving birth to their own child. Having Harry changed me so fundamentally for the better that I will always be grateful.

We have discussed adoption, so that particular avenue has not yet been closed off.

 

Will there ever be a cure for Harry's type of disease?

One can only hope. Genome research and our understanding of how the cells function and interlink with others is advancing quickly, however Harry's disease was at a cellular level and once the disease is in the cell it cannot be cured. There is a type of cloning research, which allows the nucleus of the mothers egg to be transplanted into a host egg, therefore eliminating the mutant mitochondria. This is still very much in the early stages and I don't think I would benefit from it in my lifetime.

 

If Harry had survived what was his probable prognosis?

Not a good one, Harry probably would not have walked, held his head up, talked or be able to feed on his own. Blindness, deafness, spasticity and extremely low muscle tone. Harry presented at birth with his symptoms, therefore he had a probable 98% contamination of all his cells, some people have only 1 and 2 % contamination and the symptoms are mild. When the symptoms are so pronounced babies will generally only live up to around 3 months.

 

The guards gave you an escort trying to get Harry home, how did they cope with Harry dying?

They were absolutely superb, every one of them came into the mortuary when we took him from the ambulance and offered their condolences, and they tried so hard to get Harry home. They were very upset and cried, Harry's dad had to comfort them. Brian the ambulance man came in and kissed Harry and I on the head and blessed us both. Human kindness knows no bounds when others are in pain after losing such a beautiful child.

 

How are you coping with the grief?

It is the hardest thing, I go to bed knowing that Harry is gone and I get up knowing he is gone, the pain is physical and feels like a huge blockage in my chest. Sometimes I look at his pictures, smell his clothes and I feel like I could just die with the pain. Other times I remember his funny noises and his gorgeous smile and I get overcome with love and cry. Every waking second is filled with Harry and I cry when I think of what we should be doing together, like walking in the park looking at the ducks.

We went to Wexford for the weekend with the intention of scattering some of Harry's ashes in the lake at FerryCarrig. Whilst driving down, my partner said he knew he wanted to take Harry on a trip around Ireland, but had envisioned him being in his car seat and not in the boot wrapped warmly in a sock. It's great that we have not lost our sense of humour.

I do get a sense of peace when I think of how life could have continued if Harry had never existed, Harry gave me the most joyous moments and the most painful, the depth of emotion will never be repeated.