786 days

One year ago today our lives changed irrevocably when our beautiful blue eyed boy lost his fight against everything that had been thrown at him. As the anniversary of Harry’s death has been approaching, it has given me cause to reflect on the last 12 months and how much has changed for us as a family. The arrival ten days later of Harry’s little sister was such a welcome distraction in the midst of our grief and Maisie has charmed us every day since then with her cheeky grin and infectious giggle. The similarities between her and her older brother are astonishing, breathtaking at times, but always heartwarming when I think that a bit of Harry lives on through Maisie.

To say that I miss Harry is an obvious and somewhat trite thing to say but there are occasions when the pain of exactly how much I miss him is almost unbearable. It can hit with such surprise and ferocity that it feels like a physical blow. Apart from hearing his cheeky giggle and seeing his beautiful face, holding him in my arms or even having to retape his NG tube, what I miss most of all is the future, the future of what could have been. Robbed twice of watching Harry grow up, firstly in the post surgery hell of brain damage and secondly that day one year ago, I miss being able to watch my son overcome the difficulties he was faced with. I miss being able to watch Harry and Maisie play together, seeing Harry’s face light up when Maisie giggled or the two of them laughing together. There is nothing that I wouldn’t give to be able to watch all three of my children grow up together.

Many people have written about how much they would want to have ten more minutes with their loved one so that they could hug them one last time or tell them that they love them. I don’t want ten more minutes with my boy, I just want him back in my life. For the rest of my life. 365 days ago I lost a part of me that will never grow back and the pain will never go away. I’m sure that the pain will ease with time and the grief will become less raw, but even with the huge amount of joy and happiness that Maisie and his new baby brother will bring, there will always be a dull ache of sadness where Harry should be.

The morning of Saturday 16th 2013 replays in my head differently from day to day, sometimes whirring past as if in fast forward, sometimes dragging by slowly, and at other times a mixture of the two with bits like the ambulance journey seeming to take an absolute eternity and the interminable waiting for any news while they tried to revive our soldier. What overrides everything though is the memory of the empty feeling of complete and utter helplessness that I felt knowing that my efforts to revive Harry were having no effect.

I don’t know if I will write about Harry again as this seems like a natural end to the story. There are no more milestones for another ten months until his third birthday and as cathartic as these pieces are to write, reliving the memories is emotionally hard work. If this is indeed the last piece I write then I would like to thank each and every one of you that has taken the time to read my blog from the bottom of my heart. I am beyond humbled that anyone outside my immediate family and friends would be interested. I don’t know if there is anything that anyone can take from my words but if they have offered just one person some small crumb of comfort then I am glad.

I am incredibly lucky to have the support of a wonderful family and the most supportive of friends, without whom I could not have got through the last 786 days. Thank you, each and every single one of you. You will never know how much you have helped me.

Happy Birthday Harry

Dearest Harry,

Today is your birthday so I thought it was about time that I wrote to you. Your mum and I are determined that today will not be defined by sadness but instead we are going to fill the house with family and friends and have a party for you. You were such a happy little boy and filled our lives with so much laughter and so many smiles that it would be wrong if we didn’t celebrate your birthday with fun and just a few of the people whose lives you touched – your beautiful big blue eyes drew so many people in and your beaming smile captured the hearts of everyone that had the pleasure to meet you.

I don’t want you to be thinking of me as being sad when I think of you Harry. Of course there are some days when the pain feels like too much to bear but those days are getting fewer now. I love to think of the happy times we had with you and laugh when I think about how much you hated my beard scratching your skin. I know that you keep an eye on me, your mum and your little sister and make sure that we are doing ok. It offers me some comfort when I think of you being at peace now and being able to watch over us and keep us smiling. I miss you so terribly every day but it is sometimes hard to explain what it is like so I have taken the liberty of paraphrasing a poem that I found that goes some way to explaining what every day is like for your mum and I:

“Every morning I wake up and put on a mask,

the mask makes everything seem all right. But they don’t know I cry at night, The nightmares just wont go away…. If only I knew it was your last day, for nearly a year I’ve felt this pain, the feeling just wont go away. Everyone thinks I’ve dealt with your death the best, but without this mask I’d be a mess”

I wish so much that you had been able to meet your little sister – you two would have been inseparable with your cheeky smiles and infectious giggles. We named her Maisie Harriet after you and whilst I am a little worried about that inevitable moment in the future when she asks about her middle name, I know that my heart will burst with pride when I tell her about how brave her big brother was through everything that got thrown at him.

Happy 2nd Birthday my beautiful son, my love for you grows stronger with each passing day. I am not articulate enough to be able to tell you how proud I am of you and how much I miss you. I only hope that I can make you proud as a father to your little sister and next year to your little brother too.

Sleep tight Harry, with all my love, Daddy xxx For as long as I have tears in my eyes the flowers on your grave will never die and for as long as I can dream, your memory will never die.

421 days

I don’t know if this will be the last blog post that I write but I am fairly sure that it will be the hardest. It is only now, nearly three months afterwards, that I feel I am able to try and write about it. It is impossible to articulate the depths of the pain that Livvi & I have endured over the last 10 weeks but I thought it was important to try.

On Saturday 16th of February our beautiful son Harry died peacefully at home. There are many questions yet to be answered about what caused Harry’s death but nothing can change the fact that in what seemed like the blink of an eye, our little fighter had fought his last battle against the hardships that he had had to endure throughout his short life.

There are no words that I can find to adequately describe the state of tortured limbo that Livvi and I found ourselves in while the emergency teams both at our house and later at the hospital tried to bring our son back to life. I don’t think that I will ever forget the drawn out minutes waiting in a stuffy airless room while doctors tried in vain to revive Harry. The absolute shock plays with your mind in such a way that it is almost a perverse relief to be told that there is nothing more that can be done. I can remember thinking that even though there was never going to be a happy outcome, at least our poor son’s tiny body would not be racked by any more of the brutal convulsions of the defibrillator. What was this lack of blood supply doing to his already damaged brain? Hadn’t our son been through enough already in his short life?

Harry beginning to smile again in the week before he died

Our overriding impression of Harry’s short life will be one of smiles and laughter, not just his own but also how he inspired them in others. This despite the fact that for the last five months of his life we hadn’t seen his beautiful face light up into one of the big beaming smiles that he was famous for. Our memories of our son are filled with his infectious giggles and the joy that his unbounding happiness gave us. Not knowing the prognosis of Harry’s brain injury was the hardest thing to live with on a daily basis, not knowing whether there was any point in us hoping for the recovery that may never come. I think what was the most astonishing to us both were the leaps and bounds that Harry seemed to make once we had brought him home from the hospital. From the little boy who was in constant agony when we brought him home in late October, the transformation was remarkable. Indeed, the last two weeks of Harry’s life probably brought us the biggest surprise as we started to see glimmers of the smiles that were his signature. We even heard what may even have been a giggle. Were these the tiniest green shoots of a recovery that we never dared hope for? Fate, it turned out, had other ideas.

Harry’s funeral was a gloriously sunny spring day in early March. Cold certainly, but with clear blue skies and sunshine to lift the spirits of all of the family, friends, colleagues and health professionals that came to celebrate Harry’s life with us that day. As hard as that day was to get through, it was important to us both that we had no regrets about the service. With that in mind we both wanted to say some words that would not only reflect on Harry’s short life but would also try and encompass all of the joy that Harry had brought to our life.

Night night son, sleep tight x

My eulogy to my son, Harry Robert Nixon:

My son was and always will be my inspiration. No matter what had happened during my day,  I could not fail to find strength when I saw my boy. I can still scarcely believe what Harry had to endure in his short life and yet he kept fighting back. Everyday issues seemed to pale into insignificance whenever I was with him. I like to think that Harry taught me to be a better person, I certainly found reserves of strength that I couldn’t ever have expected to find otherwise. Perhaps more importantly, I learned to be grateful everyday that we had a beautiful happy little boy.

Harry’s strength was also an inspiration to others and in return others have been an inspiration to us as a family. Livvi and I have learnt so much in the last 14 months and as a family, we have been lucky enough to meet some wonderful and kind people who have helped us see that there is life beyond the diagnosis, and that children and families do not suffer from Down’s Syndrome. In fact, once we had got over the initial shock of Harry’s diagnosis, we were excited about Harry’s future – we felt privileged to be part of a small club that not everyone has the chance to join. 

 

Harry’s big beaming smile could brighten any mood, lighten any room and above all else made every day a joy to get up for. It is testament to Harry’s character that there are so many people here today. Harry touched so many lives in his short time with us, he cemented existing relationships and helped forge new ones, bringing us into contact with some of the kindest and most generous people it has been my pleasure to meet.

 

If that is Harry’s legacy then it is a fitting one.

Alive & Kicking

“First let me tell you that your baby is alive”

Ten words that will stay with me for the rest of my life.There were other words as the surgeon told us about Harry’s condition but not many that I remember to be honest. What followed was the worst night of our lives, as we faced the very real possibility that we might not get to see our little boy open his eyes again. Our little boy, who in his short life had already shrugged off open heart surgery at four and a half months. Our little boy, who filled our lives with so much joy and happiness. This couldn’t be happening could it? This is the kind of thing that happens to other people, the kind of thing that you see on television. But that’s always made up. Always dramatised, always creatively enhanced to get you on the edge of your seat. Perhaps, but this time the seats were ours and nothing was being creatively enhanced.

Harry’s latest sojourn to RMCH began on Friday 14th September for what was supposed to be a routine operation to correct his defective lower intestine. Harry was born with Hirschprung’s Disease so an operation was necessary to remove the defective part of the lower intestine and attach the remaining lower intestine to his anus – a ‘pull through’ operation. This operation was being combined with the reversal of his colostomy, performed when he was 9 days old to bypass the defective section of his lower intestine. Bearing in mind that Harry had recovered from open heart surgery so quickly and had been discharged after 6 days (after an initial expected stay of up to 4 weeks), we saw no reason to doubt the predicted 5-6 day period of recuperation. Recovery seemed to be starting so well – Harry was taken from the operating theatre to the ward where his surgeon pronounced the operation a success. Finally, we could start to enjoy the next chapter of Harry’s life, free from his colostomy bag and, more importantly to us as parents, free from any more scheduled surgery. Three operations under general anaesthesia in nine months being more than enough thanks.

Our relief was short lived however. As Saturday progressed, it was obvious that Harry was  increasingly uncomfortable. Early in the morning any discomfort was put down to a normal reaction from the surgery but as the day went on it became more and more apparent that there was something wrong. Fortunately Harry’s nurse refused to dismiss Livvi’s protestations as those of an over-anxious parent and basically frog-marched a surgeon to have a look at Harry’s abdomen. Over the next days and weeks it dawned on us that that nurse and that surgeon saved Harry’s life that afternoon. During that afternoon under the surgeon’s supervision, various options for Harry’s discomfort were ruled out until it became obvious that whatever the problem was, it was getting worse. Eventually Harry’s pain and discomfort increased to such a level and his abdomen distended to such an extent that the only option was to take him back to theatre and perform more surgery to discover the problem. Make that four operations under general anaesthesia in nine months, two of them only 24 hours apart.

What I do remember from that awful night is being told that for forty minutes on the operating table, Harry’s blood pressure was so low as to be unrecordable. Therefore it was a distinct possibility that there may have been some neurological damage (hospital euphemism for brain damage so as not to scare us further I think). What form this may take, and indeed the extent of it, only time could tell.

Between Livvi and I, we have had some personal tragedies to endure, but the night of Saturday 15th September will go down as the hardest. In a windowless box room in the bowels of the hospital, we spent the night curled around each other, not wanting to close our eyes, let alone go to sleep, just in case the phone should ring. The feeling of helplessness that night was overwhelming, the only emotion one of fear, no matter how positive we tried to be. The only calm that I felt was in the first few seconds of being awake after a catnap, swiftly replaced by the sinking realisation that this wasn’t a nightmare that I had escaped from by waking, this was real and very scary.

Harry had gone into massive septic shock as a result of the surgery and the best way of treating him was for the doctors to take over his body for him and let all of his energy and strength be expended on fighting the infection. This involved Harry being put into a chemically induced coma and put onto a ventilator so that he wasn’t even breathing for himself. In those early days, at any one point Harry was on up to 9 different medicines and pumped so full of fluid to keep his blood volume high enough that he became so engorged that he was almost unrecognisable. There are no words to describe how hard it is to look at the shell of your child and wonder if you will ever see him open his eyes again.

Harry : ICU Day 5

Harry : ICU Day 14

Five days into his recovery, as his sedation was being weaned down, Harry started to have seizures. Almost certainly linked to the massive insult that his brain took as a result of the septic shock, these seizures were a very real manifestation of our worst fears of possible brain damage. Characterized by fluttering eyes and then tremors in his left arm and leg, they were a precursor to one of Harry’s many setbacks. Just as we were beginning to think that we had got through the worst, Harry’s health took a nosedive and we spent another weekend wondering if he would pull through. Put on yet another medicine, this one to control his seizures, Harry was sedated again whilst the flood of medicines fought off the infection that riddled his little body.

Harry spent a further two weeks in the Paediatric Intensive Care Unit (PICU) as one by one, his monitoring leads came off and his intravenous lines were removed. The biggest step was the removal of the ET tube and the ventilator. Finally, this meant that Harry was strong enough to breathe for himself and it was the last step before being discharged from PICU. It is now two weeks since Harry was discharged from PICU and so far we have had no reason to think that he is going to need to be readmitted (the small matter of a partially collapsed lung notwithstanding).

It is amazing to think how far Harry has come over the last five weeks, and I am astounded every day at how strong our little boy is – it is easy to forget that he is not even 10 months old. There have been times over not just the last five weeks, but throughout Harry’s short life, when it has been very easy to think ‘Why us?’ or ‘We are so unlucky’ but the more time that I spend in and around the hospital I realise that we are blessed with an amazing boy that we are two of the luckiest parents in the world. Everyday I see so many children that have chronic and debilitating conditions and yet are so happy and carefree that it puts many of us to shame.

I hope that in the coming months and years I am able to keep this thought with me.

To screen or not to screen?

Nothing quite prepares you for the overwhelming rush of all-encompassing emotion when your first born child is handed to you. No matter how many members of your family, close friends, not so close friends, work colleagues, passing acquaintances & complete strangers you talk to and no matter how much advice you are given (solicited and otherwise), no words can ever adequately describe the intensity of the moment. Those of you who are familiar with my, at best, tenuous grasp of my emotions (please refer to previous life milestone entitled ‘The Wedding’) will be under no illusions as to my immediate reaction. Tears. And lots of ‘em.

The moment itself came at 9.11pm on Thursday December 22^nd 2011, when Harry Robert Nixon was born at Wythenshawe Hospital after an eighteen hour labour. Harry decided to announce his imminent arrival by trying proving that his bowels were in fine fettle and that we had kept him waiting quite long enough for his first trip to the toilet thank you very much. Not only would this lead to further complications in the form of an infection but he was an interesting colour when he was pulled (literally) into this world. The insertion of forceps is not an image that shall leave me any time soon.

As is routine now, we were offered screening for DS during Livvi’s pregnancy but we declined it. Not only would it have made no difference to our decision to continue with the pregnancy, but the Nuchal Translucency Scan can only ever give you a percentage chance. This would surely just give us something else to worry over for the remainder of the pregnancy wouldn’t it? Anyway, Livvi was considered such low risk for giving birth to a baby with DS that we never really gave it a second thought. Of course there were moments when we wondered ‘what if?’ but to be honest we dismissed these thoughts out of hand. Speaking for myself, I know that I got so carried away on the rush of euphoria that impending first-time fatherhood brings, that the 12 and 20 week scans came and went with a blur (that was probably the tears…).

It is only looking back now that I realise that I was merely a wide eyed passenger in those darkened rooms, more interested in the geek-fest of technology involved in the scan than what it was, or more to the point wasn’t, showing. Having decided against any screening and considered low risk, Livvi and I never thought to question the radiographer when she showed us Harry’s heart fluttering away. Apparently there is no specific instruction for the radiographers to check for any cardiac structure deficits at the 20 week scan stage; in fact, as long as there are 4 chambers and they are all pumping then it is deemed satisfactory. Harry’s congenital heart defect (CHD) meant that the middle of his heart was missing, the septum having not formed properly in utero, which also gave no foundation for the anchoring of the bi- & tri-cuspid valves separating the atria & ventricles (this defect is known as AVSD “atrio-ventricular septal defect”).

Screening itself would not have illustrated the CHD but it would have highlighted the increased chance of Harry having DS which in turn would have, in all probability, led to more detailed scans of Harry’s heart due to the increased risk of children with DS developing CHD.

All of which brings into stark relief the question posed at the beginning – To screen or not to screen?

My wife Livvi has written a blog piece about this very subject http://livvi1205.blogspot.co.uk/ which highlights the need for understanding what the screening is for. In an age when it seems to be more and more common for the screening to be a more socially acceptable form of genetic cleansing (however polished the arguments may be), it is imperative that the screening must be undertaken with the best interests of the baby at heart (no pun intended).

Livvi & I would not swap our little bundle of joy for anything in the world, DS or no DS, and the ONLY reason in hindsight that we would have had screening is to protect Harry from the extra strain placed on his heart by the stress of a natural labour and indeed the extra complications of having to fight off the infection which could so easily have been avoided if we had known about the AVSD in the first place.

The sooner that all parents understand that screening can be less about any chromosomal issues and more about any associated general health issues the better.

 

 

Here goes!

I never really thought of myself as a ‘blogger’ per se, but since the birth of our beautiful son I have come across more and more blogs written by parents who have inspired me to start my own.

Harry Robert Nixon was born at 9.11pm on Thursday 22nd December 2011 with Down’s Syndrome and our journey began, albeit in a slightly different direction to the one we planned.

There are still so many prejudices surrounding Down’s Syndrome, born almost always out of ignorance and fear, that I wanted to try and spread the positive awareness that people like Tom Bachofner http://thefuturesrosie.blogspot.co.uk are promoting.

There are, and indeed have been, so many facets to Harry’s short life so far that this blog will try to encompass them all. I will attempt to keep things on track chronologically but I can’t promise. There may even be occasional flashes of humour. What I do hope is that I can illustrate how much joy Harry brings to our lives every day.