Love between siblings (© María Tarruella)

A diagnosis of congenital heart disease represents such a serious problem that frequently nearly all interest and concern is initially focused on the affected child, and later on the parents. In such situations, the siblings of the ill child are often the forgotten members of the family. However, we should remember that these siblings have their own problems, which need to be addressed. “I can´t help it if I’m not sick”, is what Mark´s eldest sister said to her father when she felt her parents were too worried about Mark´s congenital heart disease to give her enough attention. Siblings of children with a congenital heart disease can often feel neglected.

Being left alone

When parents have to spend a lot of time at hospital or at home looking after the sick child, siblings can feel displaced, ignored, or relegated from maternal and paternal care. They often perceive their parents’ concern about the child with heart disease as favouritism, and thus can develop feelings of rejection and resentment towards their parents and sibling. They might also develop strong feelings of guilt.

The lack of contact with parents can also create fears about the reason for the illness, especially when siblings are very young. They might feel responsible for what has happened to their sibling, going as far as to think they are guilty for the illness and that is why their parents do not talk to them or have abandoned them. They might even feel guilty for causing the pain that their parents are feeling. Sometimes they worry about the illness itself, even to the extent that they think they can get the illness or die. At the same time, the natural feeling of relief about being healthy and able to do things that the ill sibling could never do can increase the feelings of guilt and cause lethargy, sadness, and even the desire to get ill themselves.

Not understanding what is happening

Some studies have shown that siblings of children who are chronically ill do not have a uniformly higher risk of psychological imbalance. Furthermore, individual differences can be recorded that are more closely tied to the duration of the chronic illness than to its presence or absence. Despite these findings, siblings of a child with congenital heart disease frequently show behavioural problems that are linked to the need to attract attention. They can also show regressive and infantile behaviour (eg, inability to eat alone or bed wetting). In many cases, their feelings of abandonment can turn into feelings of jealousy or envy towards the ill person. These feelings might make the sibling adopt rebellious behaviour patterns or even show aggression towards their ill sibling.

Other studies indicate that siblings of ill children do well at school and are psychologically and socially well adapted, suggesting that they develop strategies towards the compensation of the pain that the family goes through or towards recognition or attention which is similar to that received by their sibling. Research also suggests that children with an ill sibling are usually more responsible, mature, and cooperative, which will have positive effects on their future psycho-social functioning.

What needs to be considered

When assessing the effect that the diagnosis and treatment of a child with heart disease might have on siblings, the following factors should be considered: age, the severity of the heart disease, the hospitalisation period and the distance from parents. 

When the eldest is very young

The first factor is the age of the child who is diagnosed. The diagnosis for a baby will not have the same effect as that for a much older child or adolescent. Nowadays, most congenital heart diseases are detected in the first years of life, and can even be detected a few days or months after birth. Generally, most defects tend to be corrected as soon as possible so that the child can have the best possible chance of healthy development.

Consideration of the age of the diagnosed child has two implications.

  • First, if the diagnosed child has siblings, they will probably be older than him or her when the first operation takes place. Therefore, difficulties of understanding that are normal for a child of that age must be added to other feelings such as displacement.
  • Second, if the diagnosed person is very young, the emotional effect on the parents, and most importantly on the mother, has to be added to the readjustments that are inherent to the postnatal period, thus making it harder for the mother to control feelings and explain what is going on to the siblings.

If the affected child requires later operations, or if the heart disease was detected in an older child, there could be younger siblings who might need attention, according to their particular needs.

No time for explanations

A second determining factor is the degree of severity of the heart problem. The most severe heart diseases might require admission to hospital and surgical treatment immediately after diagnosis. In such situations the child with heart disease must be admitted and operated on with some urgency, which gives little time for the parents to prepare and warn the other family members.

The first operations for children with heart disease usually consist of palliative solutions, not definitive ones, meaning that the child will have to undergo operations throughout his or her life. These operations, like other operations for children with less severe congenital heart disease, are usually scheduled in advance, so that more time is available to prepare the family.

Long hospital admissions

A third factor that could determine siblings’ reactions will be the time that the period in hospital lasts. The most severe heart problems are generally those that require longer admission in hospital and recovery after surgery. However, specific types of unexpected complications can occur after the operation that make admission last longer than would usually be the case for less complicated procedures. Nevertheless, long stays in hospital cause severe destabilisation of family life, which directly affects the siblings.

Being far away from home

Finally, a fourth factor is parents being geographically distant from the siblings, a situation that is further aggravated while the child with heart disease is in hospital. The separation is tougher still when the child has to be admitted to hospital in another city, since contact between siblings and parents and the admitted child becomes more difficult. Both parents and other family members should be aware of this factor and its possible effects, and take steps to keep potential difficulties to a minimum.

What parents can do

At all times, parents need to be aware of the feelings of their child with heart disease and his or her siblings, so as to enable and encourage them to adapt to the new situation and avoid potential negative behaviour.

Information, communication and contact, involving siblings in preparing the child to go to hospital and visits are some general points that parents need to consider in order to avoid negative effects on siblings of children with congenital heart disease. For more advice see our fact sheet ‘advice for parents’.  

Reviewed by: Kirsten Aune Walter
Last updated: 2009-02-09

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Comments on this article

19.01.2011 | ana vicenta jelincic faundes, chile
yo soy chilena tube gemelos con problemas caridacos el diego y el alexander tenian el mismo problema civ mas ap y lo operaron alos dos cuando tenian dias de recien nacido en santiago de chile. luego lo dieron de alta me traje a uno primero a punta arenas luego volvi a santiago a buscar al otro y nos devolvimos a punta arenas. luego el diego tenia 4 meses y lo lleve al hospital por resfriado y le encontraron un virus luego le pusieron un cateter para darle mas antibiotico pero fue mal aplicado vi ante mis ojos como murio. y el dolor de perder a un hijo solo se amortigua con los años y luego me aferre a mi hijo alexander que estaba en la casa y luego me quede embarazada y nacio el pablo que es sanito y ahora estan del mismo porte siendo que el al (alexander) es el mayor tiene 5 años y es cardiopata tiene en su historial 4 cateterismo y 2 operaciones a corazon abierto. es un niño alegre y el hecho de tener a su hermano (tiene 3 años 11 meses) le a servido mucho lo quiere mucho, se cuidan y se hablan de su corazon y son unidos a la hora de ir al medico eso le da valentia a mi hijo para ver medico ya que se dan la mano y eso para mi es muy importante porque el sabe que mami, papi y su hermano siempre estan con el

yo soy una convencida que este canal de internet nos dan mas informacion sobre este tema que para mi es importante en mi vida por mi hijo y por otros niños del mundo.

gracias por existir
desde punta arenas

una mama que se emociona al saber que exiten
ana jelincic faundes mama de alexander
16.10.2012 | Alyss Ortega, Mexico
Hola Mama de Alexander, yo soy Alys hace un año y 4 meses perdi a mi hija de tan solo 2 añitos, no aguanto la operacion a corazon abierto ella tenia CIV y Conducto persistente.

No encuentro consuelo, y aparte tengo mucho miedo de que si me vuelvo a embarazar se pueda repetir la historia.