Waking up in the early morning with the coppery taste of blood in your mouth, with a sick feeling in your stomach and with your face crusted with dried blood from yet another nosebleed .The dark hours before dawn, lying awake with a cold compress, dipped in a basin of water which had earlier been reassuringly cold but now was at best tepid, wrapped around an ankle, knee or elbow. Waiting, waiting, waiting for the house to rouse, for the distraction of conversation or company. This was the reality of growing up with severe Haemophilia in the 1960’s in Ireland. A time before factor concentrates were available, a time when Haemophilia treatment consisted of cold water, ice and little else, a time before comprehensive care. Growing up with Haemophilia then was difficult and challenging- more often I think for the parents than for the person with Haemophilia. I know that parents then felt a sense of helplessness, of isolation, often of near despair .Haemophilia was a cruel burden on the whole family.
This grim picture may read like an excerpt from Angela’s ashes- that was not my intention. The burden was Haemophilia with no availability of treatment. It was not accompanied by cruelty or neglect, deprivation or despair. The opposite was the case. Despite the inevitability of bleeds on an almost weekly basis, life went on in as near normal a fashion as possible. In my own case, my parents, and particularly my mother (well, this is an Irish family in the 1960’s we are talking about) was excellent.
She gave me all the care and attention you could wish for and she was very sympathetic and helped in every way possible when I was coping with regular bleeds. At the same time, she strongly encouraged me to get on with my normal schoolwork and activities when I did not have a bleed. I was encouraged to get the best education I could manage. When I had recovered from a bleed, I would return to school as soon as possible. During a bleeding episode, I would, when possible, have homework sent to me so that I would not fall too far behind. I was encouraged to participate in sports such as running, swimming. I was not rebuked too strongly when I played soccer except for one occasion when I played Gaelic football. As I grew up, I was encouraged to get a summer job- which I did from the age of 13- and I went away for weekends with the scouts and the youth club. At age 15, I hitch hiked around a large part of the country with 7 friends. It is worth remembering that I did not have any reassuring factor in my rucksack, no mobile phone and no comprehensive care centre to go to in the event of a bleed. At age 17, I moved to Dublin to go to college.
Despite the inevitable shock on discovering that shirts do not self iron, I was ready to cope with independence. At about that time factor concentrates became available on something like a regular basis and they confirmed my sense of freedom with life stretching out before me as an endless kaleidoscope of possibility and promise.
Why am I rambling on like this? Perhaps this story will not seem relevant for parents of young children with haemophilia. Your children are fortunate. They have access to state of the art treatment and prophylaxis using recombinant products. The experiences that I and those of my generation went through should seem as remote to them as ancient history. They have access to comprehensive care and home treatment. For children with haemophilia now in Ireland, life is full of promise and possibility. Their treatment, if complied with, should ensure that they do not get joint damage. Their quality of life and life expectancy will be normal. There should be no obstacles to their getting an excellent education, employment (providing the economy eventually recovers!) and have a healthy, happy and fulfilled life.
The obstacles may come, not from their Haemophilia, but from how they cope with their Haemophilia. Even with excellent treatment, haemophilia remains a challenge. Children do not like to be different to their peers and they may, at times feel that their Haemophilia sets them apart .They may feel that regular injections place a burden on them. They may resent the few things they can not do (such as boxing, rugby) rather than appreciating the very many sports and activities they can participate in .At some point in childhood or adolescence, they may rebel and refuse to take their treatment. This can happen, ironically, because the treatment has meant that they do not get bleeding episodes. They may not realise that stopping the treatment will lead to bleeding episodes and perhaps risk damaging their joints which will have been so carefully nurtured by prophylactic treatment up to that point.
These are challenges which may confront you as parents. How you deal with them will, I believe, greatly influence and mould your child’s ability to cope positively with his Haemophilia for the rest of his life .It may influence your daughters view of her brothers Haemophilia and if she is a carrier may influence her decisions about having children in the future .These are potentially onerous challenges but , from personal experience, I am going to take the liberty of suggesting some strategies and actions which you might like to consider:
- Your child has Haemophilia. He will have this for the rest of his life. The sooner you can help him to deal with this in a positive way, the better for his future
- Talk to your comprehensive care centre team and teach your child about Haemophilia giving him age appropriate information as he grows up.
- For a child with haemophilia, this is his reality- always has been and always will be. I believe sincerely that it is often worse for the parents who can feel helpless resentful or even guilty. Don’t. Haemophilia, especially with modern treatment is a light burden for a boy to grow up with providing his parents are supportive and his life is not unnecessarily constrained. Resenting the Haemophilia or feeling guilty are destructive and unnecessary feelings.
- Encourage your son to participate in appropriate sports. If you would like your child to swim, play tennis, play golf, encourage this. Why not play these sports with him.
- Encourage your child to miss as little school as possible. Education is very important to the person with haemophilia. You want your son to get an education which will give him the option of a career where he will work with his intellect and as an educated and mature adult you will also have assisted him to cope with haemophilia into the future.
- Of course this means learning a reasonable amount about Haemophilia yourself. Learn. Know how to recognise a bleed. Understand the differences between treatment products. Absorb information from reliable sources such as your treatment centre or the Irish haemophilia Society. ( Beware of limiting your information to what you can Google- there is a lot of nonsense amid the real information)
- Give your son the love and affection he will need. Be sympathetic and comforting if and when he has a bleed (In my childhood, this also included extra treats such as extra comic books or large bottles of fanta orange). However, take care not to smother him, to overprotect him or to treat him differently from his siblings. ( If he gets a treat, so should his brothers and sisters)
- This is a job for both parents- not just the mother. Guilt and resentment are counterproductive and the antidote is constructive and constant involvement in your child’s development and life. Fathers should not feel a sense of loss for what their son can not do- rather they should feel a sense of pride that their son can deal with this challenge and a sense of fulfilment that they are playing their full part in helping their son to live a full and active life.
I was fortunate. My mother, despite never having access to any materials on dealing with haemophilia or prior to the availability of any materials on the psychosocial aspects of Haemophilia, did everything right. As a parent, she helped and comforted when that was required but she also encouraged a positive attitude of coping, of not giving in to setbacks, of working hard and focusing on the positive. Above all, her attitude helped to ensure that while Haemophilia was a part of my life, it did not control my life, my education, my ambitions, my choice of career or my self esteem.
As parents, the greatest gift you can bestow on your child with haemophilia is to work together to give him a normal life. There is no reason why Haemophilia should prevent this. It will be prevented only by your own fears, anxieties or non engagement. For your child and for you, as parents, knowledge and good coping skills will mean that life will come first and Haemophilia second. That is as it should be.