For Hugo For Life

A family's longing for a child lost to Meningitis


2 Comments

My Journey with Hugo

Daddy carrying Hugo

Daddy carrying Hugo

I find myself disassociating with the word closure the more that I read about it when reading articles about dealing with grief. To bring closure means to find a resolution and to move on. It is used commonly to reference achievements in psychological terms usually sought as a stepping stone after personal trauma. For example it may have been appropriate to talk about closure after the visit to Kings College Hospital to discuss Hugo’s treatment and decisions made for him whilst in their care. It was the last of the organisations that we had to see in relation to Hugo’s death. To stop at the description “organisations” is to do a disservice to the myriad of real caring & sympathetic people that we met along the way.

The doctor at the Intensive Care unit at Kings was a fabulous Asian woman who was no-nonsense dragon, “hard ass bitch” (her words) who broke and cried with us all the way through the events in April. How she does her job and stay above it on a professional level day after day…I will always have the greatest respect for doctors. We talked about Hugo’s 4 days at Kings in her care, about the gut feeling that made her send Hugo for a CAT scan and about anything that we could have done as parents to have caught the signs earlier or to have insisted on him going to intensive care earlier, or to have just screamed at the doctors and nurses to have tripled checked the scans, signs, etc etc etc. As with all the other medical professionals she insisted that Eva and I did the best that we could have done and nothing more could possibly have been expected of us. But that day at Kings, we began to believe her again, to stay the feeling of guilt at least for another few days. I asked the question about what was it that really killed Hugo, in medical terms. So yes I get that the bacteria is a vicious son of a bitch, vile strain of haemophilus influenzae that causes meningitis, but how did it do it?

IMG_1256This next section is caveated – it is a layman’s recollection and summation of a doctor’s explanation. She began by explaining that bacteria can differ due to the different parts of the body it likes to seek out. Bacteria classified as meningitis bacteria like to seek out the meninges, the connective tissue layers of the brain and spinal cord – a membrane. Once the bacteria penetrate the blood-brain membrane, it multiplies like crazy with little to hold it back. This is because the meninges exist to prevent the body’s immune system from attacking the brain so the relative lack of an immune system capability in that area of the body gives bacteria free reign for a while. But as the body fights the infection, the cells in the body become leaky – cells are broken and tissue is flooded with white blood cells & proteins, causing cells to swell. With Meningitis the brain swells. Although Hugo’s course of antibiotics had killed off the bacteria, his body’s self defence mechanism set off a reaction that would make things worse. In adults, the skull cavity has proportionally more space for the brain to expand into whereas in little children there is nowhere for the brain to go.

My next question was, how did Hugo get infected. I mean, not where or who, but why would this bacteria infect him and not us? She paused for a moment and said that no one really knows how infection takes hold. That is, medical science still does not know what it is that allows a pathogen to break past the barriers that protect us and cause an infection. Hence him, not you, not I. Hugo was unlucky pure and simple. His body was in a certain state at a certain time and somehow it broke through. It could have been transmitted respiratorily and the bacteria could have been living in any one of us, even still living in us and we could have developed the antibodies against it. IMG_1211Encapsulated haemophilus influenzae bacteria is vaccinated against in the UK and is available to every baby on the NHS, known as the HIB vaccine. Hugo had unencapsulated haemophilus influenzae which has thousands of variants and cannot be vaccinated against – it is non typable. Infection is also extremely rare and there are barely any cases in the UK. That was a shock to me. The feeling of unfairness, why me? Subsequently amplified a thousand fold. That hurt a lot, odds that like shouldn’t affect my family. We cried and cried but the doctor was a amazingly empathetic person. It was almost like counselling but she was so personal. I left by saying that we were glad to have met her. That seems mad, but honestly it felt right that it was her that we met and no other intensive care doctor.

Eva and I have attended all the sessions that we have needed to attend to settle Hugo’s affairs; we’ve been to nursery, spoken to coroners, Epsom hospital, King’s College Hospital, nurses, GPs, funeral directors, crematorium directors, counsellors and Charity staff. We’ve cancelled Hugo from policies and spoken to our community. There is no closure with the death of a child. The family is going on a journey, four of us, one that began when Hugo was born. He will always be a baby.

– D –

We are still encouraging donations to MeningitisNow, the charity that helps families affected by Meningitis as well as funding much needed research into the disease. Please give generously and share this message.

http://www.justgiving.com/hugowong

Advertisements


6 Comments

Happy 2nd Birthday

babies and tiny todds 896Tomorrow is Hugo’s birthday I know I haven’t really spoken out loud to anyone about his birthday and convey what I would like to do on his special day. It would be an emotional day for me and my family so I have decided to keep it a small and simple celebration this year as it has only been four months since Hugo left us. I hope to muster more strength to organise something for next year.

If you would like to do something for Hugo you can light a candle on his Forever Fund and write a lovely message there – My family and I would draw comfort from reading your well wishes and to know that  you are helping us to continue Hugo’s good work and hopefully we can exceed his fundraising target! Thanks.

http://meningitisnowforeverfunds.tributefunds.com/HugoWong

My letter to Hugo.

To my baby boy Hugo,

It is going to be your birthday this Sunday 10th August 2014. You would have been exactly two years old and I can imagine you running about and saying full sentences and learning to sing the birthday song at your own party if only you were still here……..I have tears of sadness of missing you so much but I can only imagine you at your party what you should be doing and enjoying the fun you deserve.

If only you were here, you would be celebrating with all your friends from nursery at your birthday party.

If only you were here, you would be chasing your party balloons and dancing and playing birthday party games.

If only you were here, and if you got hurt or fell over at your party, you would be running up to mummy for kisses and cuddles of comfort.

If only you were here, you would be bursting all the bubbles with Jasper and friends from the electric bubble machine and be laughing like crazy bears, if only you can be here.

If only you were here, Daddy would be snapping lots of photographs and videos of you so we can compare how much you have grown since your first birthday.

If only you were here, Jasper would be singing happy birthday to you and give you a warm brother kiss and hug – he misses you so much.

If only you were here, you would have blown out two candles on your birthday cake and everyone would have been clapping and cheering for you whilst you cut your birthday cake with mummy.

If only you were here, Daddy would be massaging your fat little feet when you are tired after your party and be reading you bedtime stories with Jasper.

If only you were here, mummy would have let you sleep in bed as a special birthday treat so you can snuggle up warm and close and wake up the next to mummy in the morning.

If only you were here, the next morning you would be opening all your birthday presents with Jasper ripping the wrapping paper and throwing it all about creating lovely fun mess for mummy to clear up.

If only you were here, you would be playing with all the toys you got from your friends and be sharing it with Jasper too.

If only! If only! If only! We wish this could come true one day when we can all be together.

Happy birthday to you my sweet baby Hugo. I love you always, mummy x