OTHER ASPECTS TO BE CONSIDERED
The parents of a cardiopathic child must cope with some practical problems.
A balanced nutrition is essential for all children and even more for the cardiopathic children who often, due to the insufficiency of their heart or of the lack of oxygen to the organs, have nutritional difficulties. This applies especially to young babies with heart failure who rapidly become tired after breast or bottle suction. Fatigue hinders the baby's intake of the amount of food necessary for his/her needs, so quantitatively smaller but more frequent meals would be more suitable. Therefore, the baby is less tired and is able to feed with higher daily amounts. In general, for sucklings with heart failure, mother's milk or formula adjusted to the composition of motheršs milk are advisable for their low salt content. Indeed, excessive salt causes water retention in the body which worsens the signs of heart failure.
Some sucklings are unable to be nourished sufficiently in spite of the fractionization of meals. In these cases, it is useful to adopt the method of probe feeding. The probe is introduced into the mouth or nose and pushed into the stomach. Through this way, it is possible to introduce the necessary amount of food into the stomach without any involvement of the baby (and thus a muscular engagement). The probe feeding, after a short training period of the parents, may also be carried out at home.
For cyanotic children it is very important to assure an adequate iron supply. Indeed, iron is necessary to build-up the red blood cells which are produced (as it is well known) by cyanotic babies in a larger number in order to improve the ability of carrying oxygen to tissues. Therefore, iron deficiency in a baby with cyanogenic heart disease worsens the symptoms of his/her disease.
The cardiopathic baby in pre-school age could eat freely with a single exception: he/she should abstain from too salty foods (chips, salted peanuts, olives, anchovies, etc.).
The cardiopathic babies often have a stature and especially a body weight lower than the normal. This is due to the over-exertion of the heart which consumes energy, to the inadequacy of nutrition, and to the lack of oxygen for the tissues.
Inferior growth should not be worrisome. The child grows according to the resources of his/her heart, but the growth delay will be recovered when malformation is corrected.
The symptomatic cardiopathic suckling will get up and walk later than the other babies. This does not mean that he/she has a lower intelligence level than the others, but only that his/her motor development is slower as a result of his/her heart disease. Indeed, the symptomatic cardiopathic suckling is obliged to be less active and to explore the world in a slower degree. Therefore, it is not appropriate to make comparisons with the other children and to reach pessimistic conclusions, but it is necessary to wait until the child progresses at his/her own rate.
Parents are often perplexed by which behavior to adopt towards physical activities. The general rule is that spontaneous physical activities are rarely dangerous, irrespective of the importance of the heart disease. Therefore, it is advisable to let the child free, who will always know when to stop.
The most delicate ages are the school age and adolescence. It is necessary to decide in each individual subject which are the activities allowed and forbidden. When a restriction is indicated, it is necessary to prevent the child being in a situation (such as a sports competition) where, pushed by peers, a teacher or a trainer, it is not possible to stop if he/she feels tired.
In general, children with mild heart disease could freely exert a physical activity with no restrictions. In cases where a restriction is indicated, the specialist of pediatric cardiology will give and encourage this indication. In some cases it could also be necessary to abstain from recreational competitive sports and the child could carry out the school and play sports activity on condition that he/she is allowed to stop if he/she feels tired. In these cases the teachers and those who monitor the sports activity, should be informed by the parents and by the specialist in pediatric cardiology on the heart condition of the child and on his/her own requirements.
Very seldom there are situations where every activity should be restricted.
Sometimes, especially for adolescents where a restriction is necessary, the activity of a trainer specialized in physical conditions could be useful. Indeed, this trainer could guide the adolescent to choose the physical activity he/she prefers, of a moderate intensity, to be carried out 2-3 times a week. Intensity, frequency and length of this activity could be increased as the training state of the child increases. A regular physical activity and the acquisition of a better fitness have important psychological aspects, as the self-esteem increases.
Children with congenital heart disease should be vaccinated by the usual vaccination schedule.
Here we report some medical procedures, such as tooth extraction, removal of tonsils or adenoids and other surgeries which are mentioned in the tables of the appendix. These procedures could cause the entry of germs into the bloodstream (bacteriemia). Normally, these germs are killed by the defense system of the body. In cardiopathic children, the germs which enter the bloodstream may be localized on the endocardium (the inner coating of the heart) where, due to the alterations of blood flow and velocity related to the heart disease, some injuries are present. The germs bind up to these endocardic injuries and multiply. The resulting infection is termed "bacterial endocarditis" and could further damage the heart valves and other organs. Endocarditis left by itself is a very severe disease. The critical symptom in endocarditis is a fever or unknown origin in a child with heart disease. Therefore, the cardiopathic children with fever of unknown origin, should be always considered as suspect for endocarditis and a blood culture should be performed in this instance. In case of endocarditis, blood culture will show the growth of germs in blood. The risk of bacterial endocarditis could be removed almost completely by adopting some preventive measures consisting in the administration of 1 or 2 doses of antibiotics on occasion of the procedures which cause a bacteriemia (see the tables in the Appendix).
When to be worried
In general, some cardiopathic children could exhibit, even when the disease is well controlled, an fast respiration which further increases during meals, or a cyanosis increasing after exercise. As long as these symptoms remain stable, the parents should not be worried, but any worsening should suggest the presence of something wrong and encourage a pediatric cardiologic check. In particular, the following are worrying situations:
1. A cyanosis which rapidly increases and does not decrease with rest
2. An increase in the signs of tiredness at meals.
3. The refusal of food.
4. An exceeding body weight gain.
5. The onset of swelling in the lower limbs.
6. A fever associated with a persistent cough.
7. A new symptom (such as a chest pain during exercise or a heart palpitation lasting longer than some minutes, especially if combined with pallor).
8. A loss of consciousness (syncope).
What to say to the child
Sooner or later, the child will ask questions about his/her disease. The answers cannot be elusive: an answer containing the truth will cause less fear than the child could have if left alone to answer his/her questions. Of course, the explanation should be adjusted to the age and level of maturity of the child and seldom complex anatomical explanations are useful.
In answering the questions, a parent should view that his/her pattern versus the disease will influence also that of the child. If the parents show that they view the heart disease as a problem which could be solved and that has only a limited and transient influence on the normal life, the child will be not exceedingly worried. If the parents appear to be optimistic versus the problem resolution, this will aid the child to feel optimistic. Prior to the hospitalization for heart catheterization or prior to surgery, the child should be informed about what will happen. In particular, the aspects concerning the places which he/she does not know and his/her feelings should be cleared, rather than the technical and medical aspects. Even in this instance, it is essential to not give any faulty information on unpleasant sensations which cannot be avoided. As an example, it is useless to say that the injection does not cause pain, as this is not true. By supplying faulty information, the confidence of the child automatically decreases.
It is better to say the puncture causes pain, but that pain lasts a short time and may be tolerated.
Concerning catheterization, it is necessary to clear that the examination is not painful and that the child will be transported to a special room where he/she will see some people with strange suits and a mask.
In view of surgery, it is necessary to explain the phase of arousal and to prepare him/she to the environment of intensive care. This is usually done by the staff of the hospital, but also the parents should be ready to give some answers on what could happen.