Toddlers and Preschool Children

Being able to watch young 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. Occasionally you will need to cry - to mourn the "normal" child you wanted. That's fine. Let it go and then go back to your child, and to the normality of the fun and excitement of watching a new life take shape. 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

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 to 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 in this way is the head, and one of the worries of growing up with active haemophilic youngsters is 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 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

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.

Admission to hospital for treatment is nowadays extremely rare. If bleeds do require treatment it is given as an out-patient until the family are ready to start home therapy. Problems can arise here because the doctor on call on a particular day may be relatively inexperienced in giving intravenous therapy to small children. Parents should take advice from the staff of their haemophilia centre about the best way of giving an individual child his treatment. In general children should never be taken away from their mother or father; it is far easier to treat a child when he is sitting on his parent's lap.

A small vein set (a fine needle attached to a length of polythene tubing, which is then attached to the syringe) is far and away easier to use than a rigid needle attached directly to a syringe. On no occasion should the same doctor or nurse attempt more than three venepunctures. If he or she fails three times, success is unlikely and a more experienced person should be called. In any case children who have to undergo more than one venepuncture should be rewarded in some way. There is nothing like being out of pocket to a toddler to improve the doctor's venepuncture technique!

Two other points: firstly, parents should know the positions of the best veins to use in their child. Secondly, all this sounds very threatening to new parents, but they can be assured that they will soon get used to the procedures involved and become very skilled at handling their child 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.

Pain associated with haemophilia is rare in the pre-school child. When it occurs the best medicine is paracetamol, as in any child. Remember always to keep paracetamol preparations well out of reach; overdosage can be lethal. Remember too that medicines containing aspirin are not suitable for children and especially for anyone with haemophilia, because aspirin makes the bleeding disorder worse.

OVER-PROTECTION

The third thing that can go wrong occurs as a result of fear, especially when parents feel themselves isolated. It is a natural, loving reaction to protect one's children. Overprotection 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 overprotection 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 overprotection is to encourage activity with family and friends from an early age. Parents should not be afraid of sharing their haemophilic son. All children with haemophilia should be encouraged to participate in activities and sports with others.

SPORTS

The first sport which most children enjoy is swimming. Swimming has just 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 exercise of all joints and muscle groups in the body without gravity, and this can be particularly beneficial after a joint bleed. In addition, swimming helps coordination and the development of strong muscles which protect the joints. This in turn lessens the risk of the development of haemophilic arthritis in later life.

No child should grow Into adolescence without being able to swim.

ADVICE TO OTHERS

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 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 I always make in letters to teachers. I 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 I 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.

Other than teachers, babysitters and, of course, grannies and other relatives, the only people who really need to know about a child's haemophilia are the family and other doctors who may be consulted, and the family dentist. Going to the dentist should be a regular routine with an older brother or sister or mother or father from an early age. Although nothing will need to be done, the young child learns not to be afraid and has an introduction to dental hygiene which will be of great importance to him in later life. The doctor at your haemophilia centre will prepare letters about your son for his medical and dental colleagues.

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, too that all children like attention and rewards. Both should be distributed evenly throughout a family. Haemophilia should not be an open passport to the sweetie tin! If you find yourself tempted, remember that fat children with haemophilia fare worse than thin children with haemophilia. Extra weight puts more stress on joints, and fat kids are clumsier and more likely to have accidents than thin ones.

Parents who manage to avoid the pitfalls, and look to the normality of their child rather than to his haemophilia, will be amply rewarded.

Main lesson of the day: LET HIM EXPLORE!

Published in 1994