Our child will have a heart defect
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When you are expecting a baby you almost automatically undergo prenatal tests as that is normally what is expected. Most mothers don’t realise that they are not bound to have these examinations, even if they are recommended or part of the national health care policy.
Prenatal scans are often perceived as a kind of fun event, where the sex can be discovered and parents can ‘see’ their child. A prenatal echocardiogram is thought to promote closeness to the baby. These aspects are important, but the main purpose of prenatal scans is to look for anomalies. Most parents opting for prenatal tests expect to be told that their child is fine and everything is going to be all right. Unfortunately, in most cases of babies born with CoHD, no known risk factors are present in the mother.
Although detection rates from prenatal scans have improved in recent years, not all CoHD are easily identifiable before birth. Furthermore, a definite diagnosis might not be possible in some cases. As prenatal scans only permit structural assessments, functional aspects are unknown. A degree of prognostic uncertainty therefore remains until after the birth, mainly in complex or evolutive cardiac lesions, when cardiological evaluation can better indicate suitable surgical strategies.
This can make it especially hard to come to an informed decision if your prenatal test shows a malformation. In any case, the relationship between the parents and the treating specialist is highly important. Mutual trust is essential for a successful interaction and for the parents’ satisfaction and wellbeing.
Feeling mentally imbalanced
The news that something is wrong with your unborn child is not easy to take. Many parents find it severely traumatic, as it means the loss of a happy and untroubled pregnancy. They are, in a way, forced to mourn their imagined child. Feelings of pain, grief and depression are common and the bad news often leads to a state of mental imbalance, which may include:
- sleeping and eating disorders
- panic and fear
- suicidal thoughts
- the neglect of household activities
- social isolation.
All these feelings are normal under the circumstances and it is important to allow yourself to experience them. Concerned parents often report feeling guilty or responsible for the malformation of their child, but there are many causes of CoHDs and there is nothing an expectant mother with no known family history of congenital heart anomalies could do to prevent, or cause, such a malformation.
What now?
It is important that you come to terms with your situation as best as possible, especially because stress and anxiety can negatively affect the pregnancy. It is important to overcome feelings of loneliness or isolation and share your experience with somebody you trust. This could be a relative or friend, but it may also help if you get professional counselling, especially if you feel severely imbalanced. Expressing your feelings is crucial. It could also be helpful to share your experiences with other concerned parents.
The need make a decision
What makes the situation especially difficult is that the parents must decide their next steps quickly. It is therefore essential they have the best possible understanding of the child’s malformation and its consequences for both the child and themselves. A detailed sonography, ideally including a four-chamber view and an assessment of the great arteries, should be given and the diagnosis confirmed as much as possible by an expert foetal cardiologist. Associated malformations and chromosomal anomalies should also be considered.
The parents’ decision should consider the wellbeing of the child and the mother, as well as the long-term consequences. The advice of a multidisciplinary team of experts (such as obstetricians, foetal cardiologists, geneticists, neonatologists, heart surgeons, paediatric surgeons or other paediatric specialists, depending on the situation) might assist in the decision-making process. A multidisciplinary ‘case conference’ with clinicians and parents could also be an option. Whatever path you decide to take, ensure you have all the facts and are fully aware of your options so you can make an informed decision. Do not hesitate to ask questions over and over again if you feel insecure or overwhelmed by the amount of information you are expected to take in. Often it can be useful to have more than one counselling session to gain a better understanding of the situation. An informed decision can lessen the family’s emotional trauma.
Whatever the decision, neither outcome can be wholly satisfying. However, nobody will be able to tell you what to do; this is solely your decision, and all parents approach the situation and choices differently. There is no such thing as a wrong or right decision, only one that is right for you. Emotions can play a decisive role in this kind of decision and it is important to consider the emotional repercussions for the parents.
Preparation for a life with congenital heart disease
The news that your child is affected by a heart defect may change your world in many ways. You may feel that your previously untroubled pregnancy has become a nightmare, yet such a diagnosis no longer equates to a death sentence, with more than 90% of patients with congenital heart defects now surviving into adulthood.
Prenatal diagnosis will allow you to prepare yourself emotionally and intellectually for the birth of an ill child. This can make it easier to face the situation afterwards and to live as normal a life as possible. You will probably be confronted by a lot of pragmatic decisions, concerning, for example, insurance, support or devices/assistance your child might need. Even if it is hard to think practically under such stressful circumstances, these decisions are important as they will help you and your family cope with your child’s disease in the future.
You will probably have lots of questions and want to talk to somebody for support and advice beyond the medical information provided by your attending clinicians. These days almost every European country has parents’ and patients’ organisations to support and advise affected families. Getting in touch with a local organisation could help you come to terms with your new situation and answer the questions you will almost certainly have. It will also give you the opportunity to talk to other people in the same boat as you and to share your experiences. You can find a link to an organisation near you here.
Social workers and professional counsellors or therapists can be another great source of support. If you feel overwhelmed by the situation, it can make sense to turn to one of them for emotional support.
Preparation of appropriate treatment
Prenatal detection of the heart defect is also medically important as it allows the best possible preparation for the delivery and ensures there is immediate medical or surgical treatment on hand after the birth. This is important, as it can prevent the infant from developing severe symptoms, especially in complex cases of CoHD. Although this issue is still controversial and further investigation is needed, recent studies suggest that foetal echocardiography, which detects CoHD in the womb, can lead to a decrease in neonatal mortality and morbidity due to CoHD.
When it comes to medical care for your child, it’s important to learn as much as you can so you have the best possible understanding of the heart defect, its consequences and the available treatment options. As mentioned above, it will be helpful to turn to different specialists for explanations and advice. By working with a multidisciplinary team of experts you will be able to decide the type and location of the delivery and the steps needed to ensure the best possible outcome for your child.
End-of-life decisions
Some severe malformations are lethal, which means the child will probably not survive after birth. In such difficult situations, the only choice is between two unpleasant alternatives: either continue the pregnancy and let nature take its course, or terminate the pregnancy. The latter might seem the best way to spare the parents, especially the mother, from the traumatic experience of carrying a child doomed to death. However, even under such circumstances the decision to terminate a pregnancy can be an incredibly difficult one to make. In opting for abortion parents might feel they are abandoning their much longed-for baby, or that they acting against their own resolution (before knowing the diagnosis) to never terminate a pregnancy.
Studies of parents who’ve been in this situation indicate that continuing the pregnancy might make the grieving process easier and give the parents time to prepare for the child’s death. Being prepared for the outcome is reported as beneficial. Equally, the opportunity to see the child and take leave properly is also perceived positively by many parents. The decision, however, is yours alone and solely based on the factors unique to your individual situation.
Even in the case of nonlethal cardiac malformations, some parents might consider abortion as the best possible option. It is certainly hard to decide against a desired child and a pregnancy one feels committed to. On the other hand there is always the wish to protect the child, yourself and the whole family from suffering (for example, surgical interventions, at times with uncertain long-term results). If you feel this is better achieved by terminating the pregnancy then nobody can deny you this.
The question of abortion
Abortion is a controversial issue. Prenatal diagnostics are by no means intended to facilitate some sort of preselection to allow only healthy children but there are cases in which it may seem the best solution. Parents who choose an abortion often fear negative judgement from other people and therefore tend to keep it a secret and isolate themselves from family and friends. As one study found, this fear most often turns out to be an illusion and parents can expect support from people they confide in. A termination of pregnancy can lead to intense feelings of grief and guilt that may accompany you for a long time. Even if it was a chosen loss, grief is normal and can most probably not be worked through in a defined time period. It may last for a relatively long time.
The feeling after an induced abortion is comparable to that after perinatal bereavement and you are equally entitled to feel that way. Therefore it is important to facilitate the process of mourning and work through this difficult time with professional support, if necessary. As a problem like this affects both parents, this is a task that is better overcome together with the partner.
References
Garne E, Stoll C, Clementi M and the EUROSCAN Group. Evaluation of prenatal diagnosis of congenital heart disease by ultrasound: experience from 20 European registries. Ultrasound Obstet Gynecol 2001;17:386-391.
Khoshnood B, De Vigan C, Vodovar V, Goujard J, Lhomme A, Bonnet D, Goffinet F. Trends in Prenatal Diagnosis, Prgenancy Termination, and Perinatal Mortality of Newborns With Congenital Heart Disease in France, 1983 – 2000: A Population-Based Evaluation. Pediatrics 2005;115(1):95-101.
Larsen T, Nguyen TH, Munk M, Svendsen L, Teisner L. Ultrasound screening in the 2nd trimester. The pregnant woman’s background knowledge, expectations, experiences and acceptances. Ultrasound Obstet Gynecol 2000;15:383-386.
McCoyd JLM. Pregnancy interrupted: loss of a desired pregnancy after diagnosis of fetal anomaly. Journal of Psychosomatic Obstetrics & Gynecology 2007;28(1):37-48.
Comments on this article
und dann war gar nix... kerngesund das kerlchen! nur 300g zu leicht durch eine zu frühe geburt. mein tipp: mehrere ärzte konsultieren und immer vertrauen in sich selbst haben und nicht aufgeben!!!
Daniela
yo tambien acabo de perder a mi bebe Victoria. También nunca me detectaron nada durante el embarazo y mi bebe también tenia atresia pulmonar mas civ se veía tan santa hasta al otro día q nació tuvo dificultades para pespirar de ahí empezó todo el proceso que tu ya sabrás la operaron a los 7 días de nacida y salió bien su cirugía pero tuvo muchas complicaciones salía adelante pero cuando trataban d quitarle el ventilador no resistía y se ponía mas mal ella solo vivió un mes 25 días y un día le dio un shock séptico y falleció ese mismo día mi princesita aun no saben por y mi bebe tenia eso me mandaron a genética pero como tiene apenas 2 meses y falleció pues no me siento preparada para regresar a ese hospital y recordar todo!!! Espero podamos estar en contacto un fuerte abrazo dtb
Dos semanas antes se puso mal y permaneció 3 días en terapia intensiva, a los 5 meses nicolito falleció y me quede sin su cariño y sin mi soplito de vida, eso me genero una tristeza enorme que no pasará ya que lo tendré siempre presente en mi corazón.
Nicolás me dio la felicidad de escuchar su risa y sentir su olor, sus movimientos y la tristeza de verlo partir, aún estoy con ese miedo de pasar nuevamente por esa experiencia con otro bebe, pero esa felicidad de ser mamá me dan la valentía de pensar en intentarlo nuevamente ya que tengo a mi angelito que me ayudará.
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