When parents learn that their child is diagnosed with a congenital heart disease (ConHD), they may experience overwhelming emotions and intense stress. For all parents, the birth of an infant is a very emotional, important life event that brings along a mixture of feelings of joy and excitement but also increased stress.

For parents of ConHD children, the normal transition to parenthood is burdened by the extra stress of having to adjust to this overwhelming situation, the fear of an uncertain future for their child and the demands of learning how to take care of their baby. The heart has the symbolic meaning of life. With the diagnosis, questions as “how long will my child live, will he/she will healthy, how will the future be, and how can I take care of the baby?” immediately come to mind. Parents often state they feel as if the “ground was swept away beneath their feet” and that “their world fell into pieces” when they learned the diagnosis.

In taking care of their infant with ConHD, parents may have to face:

In this overwhelming and confusing period, parents mostly experience a process of “working through.” This can be compared to a mourning process: parents mourn the loss of their expected and “fantasized healthy baby” [4]. They may experience a broad range of feelings: grief, anger, sadness, resentment, guilt, uncertainty, helplessness, and hopelessness.

This process takes time and is a normal and natural reaction of parents to an extremely stressful situation. The length and intensity of this “working through” process varies between parents and may be imbalanced between marital partners. The differences in the working through process between the individual partners as such do not reflect the quality of the marital relationship. It may simply mean that partners may have a different way of adjusting and different way of coping [3].

How parents cope with the situation and their emotions is influenced by their:

In contrast to what might be assumed, Lawoko and Soares [5] reported that parental reactions and stress are not related to the severity of the cardiac defect as such. Factors such as financial burden, time needed to care for the ConHD child, distress, and social isolation, rather than the severity of the disease, were related to reduced quality of life in parents of ConHD children.

Taking care of a chronic somatically ill child has been described as one of the most stressful experiences for any family. Moreover, it has been reported that parents of children newly diagnosed with ConHD report relatively more stress levels than parents of children newly diagnosed with other chronic illnesses [6]. Noteworthy, these overwhelming emotions are commonly experienced at short term.

On the longer term, however, parental stress and coping may change and are influenced by the course of the illness. In the Netherlands a cross-sectional study was conducted in a cohort of children, at least 7 years after their first surgery for ConHD [7]. Remarkably, this cohort study showed that on the long term, parents of these ConHD children report a better mental health (less distress, less somatic symptoms, less anxiety, sleeplessness, or serious depression) and more adequate means of coping than parents of healthy children from the general population. These findings indicate that parents may develop other norms and values once the stressful period of the cardiac diagnosis and surgery has passed. Their experiences may have made parents strong and led them to worry less about the futilities in life. This phenomenon is also known as “posttraumatic growth” [8]. Posttraumatic growth indicates that a traumatized person may experience a positive psychological change due to their very stressful negative experiences [8].

Noteworthy, in the Dutch cross-sectional study described above, the long-term medical state of most patients was stable, and most patients did not need rehospitalizations. However, in times of new hospitalizations, invasive procedures, and renewed crises, parents will have to go through an adjustment phase again.

In conclusion, if parents learn that their child has a ConHD, they may experience overwhelming emotions and intense stress, which can be considered a natural reaction to an exceptional stressing period. Parents undergo a process of “working through” and adjusting to the situation, which takes time and is different for each individual parent.

At long term, when their child’s condition is stable, parents have been reported to have a better mental health compared to the general population [7].

The presence of a cardiac defect may alter and complicate parental attitudes towards children, irrespective of the severity of the congenital cardiac malformation. Early difficulties with feeding or care giving may harm the parents–infant relationship and especially the mother–child attachment. How parents adjust to and cope with the entire situation (diagnosis, hospitalization, surgery, invasive procedures) and also parenting their child at home can negatively influence both the short- and long-term development outcomes of the ConHD children [9].

Studies into parents of ConHD children of all ages have shown that these parents are vulnerable in the development of establishing “normal relationships” with their children. Family variables such as parenting style, marital status, and maternal mental health difficulties (maternal anxiety and distress) have been proven to be more powerful predictors of unfavorable behavioral outcomes in ConHD children than disease factors, such as severity of disease [9].

As to the perceived severity of the cardiac defect, both underestimating and overestimating the severity of the cardiac defect can have a negative influence on the development of the child [3]. Underestimation may lead to noncompliance with hospital checkups or asking too much of a child (e.g., a physical education teacher underestimating the ConHD and requesting an adolescent to perform the Cooper running test in time and giving the teenager a poor grade). Overestimation may result in overprotection and reduced physical activities (sports and leisure time activities), which may increase social isolation, loneliness, and depression in the child [3]. Inadequate knowledge about disease severity may lead to misperception of disease severity. From international literature it is well known that parents have important knowledge gaps as to the cardiac defect of their child [10].

From clinical experience it is well known that parents often report that the time of diagnosis and surgery was too stressful for them to absorb information and that they felt overloaded with information. Due to time pressure during outpatient clinics, parents may feel embarrassed or unable to ask questions. Furthermore, communication should be attuned to the intellectual abilities of parents, by giving repetition, time to assimilate the information, and understandable reading materials.

A special remark note: parents of children with mild defects have been reported to be at risk of receiving less attention from the medical doctors. Since children with mild ConHD have less frequent outpatient examinations, they may receive less information compared to children with more complex ConHD [11]. Since these parents may also have misperceptions regarding the disease severity, it is possible that they might limit their children when unnecessary. It is therefore recommendable to also spend necessary time in educating parents of children with milder ConHD.

Toddlerhood is also known as the separation–individuation phase [4]. Toddlers are preoccupied with differentiating themselves from others, and they are looking for predictable effects of their behavior on others. They are typically absorbed by ritualism (making things predictable) and negativism (gaining control over the environment). Moreover, they strive for autonomy [4].

Toddlers may experience medical procedures or hospitalizations as anger from the parent or loss of parental love. They may react to hospitalizations by passive and depressive behavior, but also anger. The separation from parents is a sensitive and challenging developmental task during toddlerhood. As a reaction on the separation from parents, the so-called “regressive” reactions are well known (e.g., a toddler who has successfully finished toilet training may wet his diapers again after a hospitalization) [4]. Possibilities for “rooming in” can help to prevent such regressive reactions and post-procedural psychosocial problems for the child.

Preschoolers (4–5-year-olds) overall may cope better with being separated from their parents. Due to magical thinking, which is typical for their developmental phase, they may have fantasies of mutilation or castration regarding invasive medical procedures. Therefore careful and proper educating the child prior to procedures is essential.

During hospitalizations parents may pamper the child or “spoil” him/her to a certain extent. Then, after dismissal from the hospital and back home, it may be difficult for parents to set limits. Parents may be inclined to pamper their child, due to a natural reaction to be protective as much as possible, since the child had to undergo such painful procedures. They may suffer from feelings of guilt that the child had to undergo all this, and as a consequence they may have difficulty in disciplining their child. Toddlers with ConHD may show temper tantrums just as any healthy child. Moreover ConHD toddlers may behave angrily and in an irritated way after hospitalizations. Parents may then worry: “is it bad for the patch in my child’s heart if he/she cries and screams so firmly?” A parent may therefore give in to the child, out of anxiety. Moreover, after such a stressful period, parents may feel exhausted and may therefore also be inclined to give in (go the easy way).

Through clinical experience it has been observed that toddlers may show eating problems, separation problems, and sleeping problems (nightmares) following hospitalizations. These reactions may last several months, half a year, or longer.

In a Dutch sample of 2–3-year-old children awaiting elective cardiac surgery or catheter intervention, increased levels of total emotional and behavioral problems were found, compared to normative data [13].