Diagnosis at Birth or in the First Few Months
Some health conditions are diagnosed pre-birth or are apparent at birth or soon after. In these situations, parents are alerted to the medical or physical issues with their baby very early on, often before they have had any chance to settle into normal family routines. If your child was diagnosed at or around the time of their birth, you may even have little physical contact with your baby if medical intervention or surgery is required.
Parents in this situation sometimes report a whole range of feelings:
• Pressure to explain complex information to family and friends
• Lack of control over their child
• Loss and grief at not being able to take their baby home
• Incompetence and lack of confidence
• Loneliness and isolation
• Fear and anxiety
• Sadness and depression
• Shock and disbelief
• Blame and guilt (especially with genetic conditions)
• Is my sick child healthy or is my healthy child sick?
Parents sometimes also fear that they won’t ‘bond’ with their child due to being physically separated from them. Depending on the severity of the condition, you may be in a constant state of fear that you may lose your baby or the diagnosis will mean you don’t have the skills to manage the condition on discharge from hospital. Some parents spend a number of days, weeks or months in hospital. During this time, you will have had to learn how to be a parent within a hospital ward and this has been described as feeling like being in a ‘goldfish bowl’. This is an unnatural environment and parents often behave in a very different way during this phase from how they would in their own home. For example, you might feel you cannot relax because expert professionals are watching and judging your abilities with your child. You might not feel able to play with your baby or sing songs or make silly noises as you naturally would in your own home.
While the baby is in hospital where he/she needs to be to get the right help, parents can feel peripheral to the medical team. However, this is not the case – parents will always be hugely significant in the care of their child as they can see the needs of their baby as a whole. Therefore, parents make a crucial contribution to the team in ensuring that all the needs of the child and family are considered, throughout any inpatient admission and in planning for discharge. Parents help to keep normality on the agenda because they have to think about what life will be like at home as well as thinking about all the usual things that have to happen in daily life for themselves, their new baby and any other children or family members.
Some medical conditions are diagnosed via the national newborn screening programme when blood is taken from the baby via a heel-prick test at six weeks of age. These conditions are screened for because they can cause a lot of harm if not picked up early, and there is a clear medical treatment plan available. In some cases, early medical intervention is lifesaving; in others, the treatment is essential to prevent serious problems occurring – for example, phenylketonuria (PKU) and cystic fibrosis (CF). This method of diagnosis is essential for the baby to begin treatment but is often devastating for parents as they will have had no clue that the child might have any medical needs at all, and their baby may have been thriving. It appears to be all the more distressing to be given a diagnosis in the absence of any symptoms. Parents can be enjoying their new baby when strangers contact them and effectively remove the rug from under their feet by delivering life-changing information.
In this early stage, parents often feel that the diagnosis has been like an assault and may then respond to the medical team as their ‘attackers’. This can be problematic long term unless this is acknowledged as an acceptable part of the diagnostic process. Parents feel an overwhelming need to protect their child. When told their baby has a long-term, potentially life-threatening condition, it is quite natural for parents to feel angry with the professionals delivering the diagnosis and have doubts or disbelief that their baby has the condition or about the severity of the diagnosis. Over time this shifts, so the condition itself becomes the focus of their attention. This can be a productive goal, as parents are then performing an essential parental role by monitoring their child’s health, providing medications and treatments, protecting them from any potential risks to their health and ensuring that they attend hospital appointments or admissions.
The timing and nature of diagnosis varies according to the condition. In some cases, the way in which the diagnosis is made has a particular impact on the family. Most health-care professionals have specific training and give special attention to the development of skills in communicating a diagnosis; it is traumatic to receive and traumatic to give. It isn’t possible to make bad news good, but the way in which it is communicated makes a big difference. Most of these long-term conditions are managed in hospitals with a team of experts who are very aware of the impact of the diagnosis. These teams often include specialist nurses, clinical psychologists and social workers whose job it is to support the parents and not just treat the child.
Later Diagnosis as a Result of Deteriorating Health
The majority of long-term health conditions are apparent in the early years due to the recurrence of symptoms impacting on the child’s health. Other conditions (e.g., cancer or diabetes) may develop later and can be of sudden onset. In both these conditions, the child has been well for a period of time and developing normally. You will have had time to adjust to parenthood, get to know your child and develop normal family routines. Parents sometimes report that although a diagnosis is devastating, they feel a sense of validation in that they knew something was wrong with their child. The diagnosis can often offer clarity when there has been uncertainty and you can take some comfort in knowing the treatment plan and expected outcomes. Nevertheless, both parents and children may still have a long period of adjustment to a complex and painful treatment or surgical plan.
Hopes and Expectations for Your Child
In this book, we use the term ‘physical health condition’ in a broad sense, to include a wide range of medical diagnoses, genetic conditions and illnesses affecting children who require regular, often complicated treatments or specialised management. The physical health condition is long term, not a few days of being unwell, and therefore not something that all other parents have experienced or understand. It may be that the usual sources of support available – for example, other parents and friends – might not be able to understand and so parents often feel they are coping alone following the diagnosis of a physical health condition. These sorts of conditions range from those that are relatively common, though no less worrying, such as asthma (which occurs in 1 in 11 children), to rarer conditions, such as cerebral palsy (about 1 in 400 children) and cancer (about 1 in 500 children).
Most parents expect to have a healthy baby. So, when things don’t go as expected either at birth, shortly afterwards, or at a later stage in childhood, it can hit you like a ton of bricks. When parents are told that their child has a significant health difficulty, they often use words like ‘devastated’, ‘catastrophic’, ‘state of panic’, ‘unbelievable’, ‘world torn apart’. The diagnosis often hits so hard because it appears to change all their prior hopes, plans and expectations. The diagnosis is not just information about the child, but potentially removes many of their previously held dreams of parenting a child and what the child may become.
In our experience, this initial phase changes and parents do re-establish realistic hopes and expectations once again, but it takes some time and work, not least emotionally, to restore those balances. If this challenge to the natural hopes and expectations of parenting isn’t acknowledged, parents are often left managing these feelings alone and in isolation. Many parents feel that no one understands what they are going through. Sometimes even closest friends and family are not capable of providing the support needed; it feels like they say and do all the wrong things, even if done with good intentions.
Impact of the Diagnosis for Parents
Following the diagnosis, your perceptions of your child, ability to cope, and confidence in being a good enough parent can take a hard knock and family functioning can go off track. Some parents say that they are very ‘up and down’, feeling on occasions like their world has come crashing down and at other times hopeful that they are doing OK and coping. Some couples say that their relationship is tested, possibly accusing each other of not being supportive or coping with emotions in different ways. Some parents say that they don’t feel able to manage with routine daily tasks such as food shopping and laundry, instead feeling overwhelmed by the diagnosis and what it means for their child and family. This is a temporary state of affairs and the family can often quickly start to try to develop a new normality and begin to function again. Parents are resilient because it becomes apparent very quickly that their child needs them. The physical health condition may mean that you as parents have to develop a range of new skills and routines, but your child needs you to continue being a parent, so those hopes and expectations can be realised after all.
The Importance of How You View Your Child
It takes time for any parent to adjust to the diagnosis of a medical condition and requires continual readjustments and recalibrations, not just about knowledge of the medical condition and how it may impact on your child’s health, but also about how you perceive and interact with your child. For example, do you see them as sick or limited in some way by their health or capabilities? Or do you see them as a child first and foremost with some additional needs and adjustments that have to be taken into account in order that they overcome any limitations? It is perfectly normal to seesaw between worries that the diagnosis will limit your child’s opportunities, and feeling optimistic that they will achieve their ambitions, especially in the early days.
Importantly, the approach you take towards the impact of the physical health condition on your child will influence their beliefs about themselves and their condition. They will learn from you how to approach any challenges they experience and will benefit from the knowledge and skills you have gained. We know that some children and families can develop a very positive sense of self despite their health condition, and they are admired and respected by the professionals who work with them. So it is important that you do feel you can get the support and advice you need to help you with the task of caring for your child in order to enable them to take a positive approach themselves.
The Medical Team and Parents’ Role
It has long been accepted that the best method of care provision for children with long-term medical conditions is via a team that includes a range of professionals, who all have expertise in a specific area, working together in a joined-up way to benefit from all of their individual skills and knowledge (i.e., a multidisciplinary approach). Traditionally, the core paediatric team consists of a paediatrician (a doctor specialising in working with children) a nurse specialist, and then health professionals from additional specialties, such as a dietician, physiotherapist, psychologist, pharmacist, occupational therapist, social worker and play specialists. Fully staffed and committed teams have the best chance of achieving high standards of care so the child is as well as can be.
Providing good-quality care relies on frequent monitoring, quick recognition and response to symptoms and preventative treatment. Sometimes admission to hospital is needed to provide more intensive or complex treatment when symptoms increase or complications develop. However, most of the time a child is cared for by their family at home, so much of the responsibility for this increasingly complex and vigilant management lies squarely on the shoulders of you as parents.
As has been noted already, parents are the hidden and sometimes unacknowledged members of the multidisciplinary team. The medical team often sees parents as one might view a patient, as the recipients of care. But they are not the patient; they are the ‘go-between’, the bridge between the child and the team. As the child gets older, they will also begin to have a say in their own care, and they will contribute more and more actively to any decisions that need to be made.
The health professional’s duty of care can be best achieved as part of a model in which parents are explicitly included as a member of the treatment team. Parents should be included in the team, and it is important that they are given a full explanation of their child’s condition and medical treatments, and the opportunity to express their views and preferences around their child’s care. Parents, children and professionals should not be construed as ‘us’ and ‘them’, but as partners on the same side working together, with treatment of the health condition as the shared target. Parents need to feel included and they need to establish a mutually respectful relationship between themselves and the medical team. For such a relationship to be successful, there are rules of practice – everyone has a responsibility to make the partnership work. If the relationship is grounded in a framework of mutual trust, then it can both function and flourish.
Sometimes a parent’s perspective can be challenging for health professionals, but the best response to such challenges is to work to maintain a relationship with parents. This can be done by understanding their perspective, developing mutual respect, and recognising that this may be a gradual process that takes time. In some rare cases, when doctors and parents cannot agree on the correct treatment or the benefit of treatment, and when this cannot be resolved between them, this might end in a law court. These situations do not happen very often, and are extremely difficult for all concerned, so it is important to maintain relationships with the team in order to ensure that any disagreements or concerns can be discussed openly and differences can be resolved within the team, whenever possible.
• The time of diagnosis can be traumatic with parents experiencing a range of painful emotions.
• Whatever the age of the child at diagnosis, parents have to cope with changes to their hopes and expectations of themselves as parents and for their child.
• Medical teams include professionals trained in offering support such as clinical nurse specialists, psychologists and social workers – it is recommended that parents do take up offers of support as this can then help them support their child.
• Parents need to have access to support to help empower and create resilience in their child, reducing any negative impacts or limitations of the health condition.
• Your relationship as parents with the medical teams may become long term – it should be one that is collaborative and respectful.