For Hugo For Life

A family's longing for a child lost to Meningitis


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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

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