Being able to watch your children explore their world provides one of the great rewards of life. Toddlers cheerfully follow a finger, usually into all sorts of potential trouble. Those with haemophilia are no different. They need the stimulus of exploration in order to develop normally. And they need that stimulus in a secure and loving environment.
That means a family without fear. Children constantly sense atmosphere and if their parents are afraid of haemophilia, they will be too. Coming to terms with haemophilia takes time. You will know you are through the worst when you look at your child and see the smile and not the haemophilia. Three things can go wrong in those wonderful pre-school years when all parents re-live their early days through the lives of their children. These are accidents, bleeds, and over protection.
Accidents, of course, happen to any child. Most can be avoided. Lock up medicines and household cleaners. Ensure the garden is secure and that dashes for freedom amongst the traffic are impossible. Keep matches out of reach, and use a fire guard, common sense for any child.
As babies with haemophilia start to become more mobile, some parents like to reassure themselves by padding the knees of long trousers, and sometimes sleeves to protect elbows from bruising, but I have yet to see a bleed into a baby’s joint as a result of bangs at this age. Bruises are common but are usually superficial and not painful. Whatever you do, don’t bandage the joints themselves. That leads to muscle wasting and instability. All babies fall down but they are well padded anyway. Nature provides them with that nice protective fatty layer that we all spend the rest of our lives trying to get rid of.
The only area which is not protected is this way is the head, and one of the worries of growing up with active youngsters with haemophilia is a head injury. All toddlers bang their heads either by falling or walking into things. However, it is very rare for the ordinary knocks of everyday life to result in bleeding inside the head. I always encourage parents to have a child who has had a big bang seen by your Treatment Centre staff because early treatment will prevent problems. Certainly, if a bang to the head has been particularly severe (for instance a hard fall onto concrete, or a child running into the side of a car) he should receive treatment. In these circumstances, it is sometimes wise for him to be admitted for a period of observation as well.
It must be stressed that injuries leading to this are very rare indeed, and that is one of the reasons I do not recommend helmets for everyday play. The other reason is because the over-use of protective clothing in ordinary activities encourages the development of awareness of handicap.
Bleeds at this age usually occur as a result of a bang or fall. Superficial bruising is the most common form of bleed. Abrasions and small cuts cause no more trouble than in anyone else, they just need a sticky plaster. Joint bleeds are uncommon in the first three years of life.
Two other points: firstly, parents should know the positions of the best veins to use in their child. Secondly, all this sounds very threatening but parents can be assured that they will soon get used to the procedures involved and become very skilled so that he can have treatment promptly. It is always remarkable to see how children adapt to treatment which, after a while, does not even hurt. It is also remarkable how quickly parents become able to relax and cope with bleeds and with treatment no matter how scared they are initially of needles.
The third thing that can go wrong occurs as a result of fear, especially when parents feel isolated. It is a natural, loving reaction to protect one’s children. Over protection happens when concern about the haemophilia leads to attempts to avoid all the everyday mishaps of normal life. I have come across families too frightened to let their children out of their homes, parents who only let their children play with soft toys and parents who prefer friends not to call because they are so frightened of a childhood scrap resulting in a devastating bleed. The results of this sort of over protection start to become apparent very early in life and are at their most severe in late adolescence and adulthood.
Failure to come to terms with haemophilia leads to isolation, loneliness, and a lessening of opportunities for marriage and a decent career. One of the best ways to avoid over-protection is to encourage activity with family and friends from an early age. Parents should not be afraid of sharing their son with haemophilia. All children with haemophilia should be encouraged to participate in activities and sports with others.
The first sport which most children enjoy is swimming. Swimming has been voted top sport for someone with haemophilia in an international survey of doctors by the World Federation of Hemophilia. Toddlers love going to the pool, and nowadays most neighbourhoods have excellent facilities for parents to take their children to play in the water. Playing in warm water allows the exercise of all joints and muscle groups in the body without gravity. No child should grow into adolescence without being able to swim.
As a child grows, he should be allowed out to play with other children and eventually go to playschool. The advice that follows is what I give to all parents.
Firstly, anyone with a responsibility of looking after a child with haemophilia should know that all the usual first aid measures apply. Children with haemophilia bleed no faster than other children and there is always time to get help. This is one of the points we always make in letters to teachers. We write these to give to the parents to take to the school themselves. In this way, teachers can see that the parents themselves are in control and know all about their son’s haemophilia. When writing to a playschool emphasis should be put on the fact that John can do everything from riding tricycles to bashing other children in the sand pit, and that no special restrictions should be enforced.
There are some funny myths about haemophilia, and we think it also worthwhile reassuring teachers that the condition presents no threat to other children. They will be reassured to learn that the great majority of bleeds are internal anyway.
Whatever you do, always be open and honest about your child’s haemophilia. The more it is talked about the easier life will be. Remember also that children like attention and rewards. Both should be distributed evenly throughout a family.
Parent’s who manage to avoid the pitfalls, and look to the normality of their child rather than to his haemophilia, will be amply rewarded.
For more info, see the I.H.S. publication Information for Teachers & Playgroup Leaders below: