(By Rachel Avison, Clinical Psychologist)
Caring for your child with congenital heart disease (CHD) is undoubtedly more challenging when you have another child or children who equally need your time, love and care.
Understandably, many parents experience the psychological burden of guilt and feelings of distress and overwhelm around dividing their time between their children. The reality is that you cannot meet everyone’s needs all of the time but, it can really help to know that children are ‘hardwired’ (evolved) to be able to adapt and adjust to life challenges.
Whilst children will likely go through a broad but normal range of emotions when faced with something they perceive or experience as difficult; they are also extremely resilient and can and do cope well with phases of turbulence. The impact of any adversity is always lessened with ‘good enough’ care and emotional support.
Children’s cognitive and emotional development plays a part in how they understand and make sense of their brother or sister being in hospital and needing additional care. However, regardless of your child’s age or ability level, all children can sense when things are difficult and all children will often use ‘care seeking behaviours’ when they feel uncertain and need extra closeness and connection to you. This innate survival mechanism (different from ‘attention’ seeking) is triggered in all children from time to time, but particularly when they want to make sure their care needs are being met.
The following is a list of typical care seeking behaviours you may have observed in your child or children when things have been unpredictable, when you have needed to be away at the hospital or spend a lot of time caring for their poorly sibling:
Toddlers
Young children tend to be more clingy and fussy in your presence when they’re feeling in need of more of you. They may want to be held or carried more, they may also display peaks in separation anxiety and high distress when you leave them, be that even momentarily. Toddlers may also act out behaviourally and you may see points of rage or anger outbursts. It is also really common for toddlers to regress backwards at times of stress, for example, wanting a baby bottle, to be cradled or going backwards with speech/ potty training etc. As mentioned above, this is all really normal and expected.
Preschool/ young school age children
As with all of the behaviours described above, young children may also try to bring you in by saying they feel unwell. This may be genuine stress response e.g. tummy ache, headache or they may be saying it to elicit care or because they have seen their sibling getting additional care at times of illness.
Preschool and young children do a lot of copying of others, so this strategy is commonly seen. You may see regressions such as them using a baby voice, needing help to do tasks they could do independently and acting out or big meltdowns that seem younger than their age.
Older children
We know that older children are better able to articulate their thoughts and feelings, so they may tell you they’re missing you or want you to be with them at bedtime or over the weekend.
However, many children’s thoughts and feelings may be out of their awareness and they too may use behavioural strategies to bring you close or you may see normal feelings of worry or sadness manifesting in other ways e.g. concerns emerge about school, friendships, homework, you may see them withdraw from activities they previously enjoyed.
It is important to remember that managing big feelings in your child is not about being responsible to take the feelings away but to help validate them, normalise them and create a sense of ‘psychological safety’ to share the thoughts and feelings about their sibling together.
Here are some top tips to help:
- Routine is key: If possible, maintain consistency with nap times, meal times, bedtimes, expectations to still attend nursery or school. Doing so provides predictability and a feeling of familiarity and safety at times of turbulence. Try to maintain family rules and expectations and boundaries of behaviour. It is important for children to know that all feelings are accepted, including anger and rage, however acting out, hitting, damaging things at points of anger is not allowed. Ultimately, you want to encourage your other child or children to live as ‘normally’ as possible alongside the stress, sadness or worry of their sibling being unwell or in hospital.
- Contact: make additional time for closeness, cuddles, special time (this can be as little as ten mins playing with your child and doing their favourite game or stories). Aim to have regular 1:1 time with your child so they feel valued too, even if you cannot be at home, a video call from the hospital ward can help your other child or children to feel held in mind and valued. If the hospital admission is lengthy, aim to schedule a set day/morning or afternoon when you’ll come home and do something together.
- Age appropriate information: ask you child or children ‘What do you understand about why your brother/ sister’s in hospital?’ Then clarify any misunderstandings in simple language they can understand. If your child asks mores questions, answer honestly. There is never any need to bluff and if you don’t know the answer or can’t explain something technical, it’s okay to say this. You can use play with hospital sets or dolls to help talk to your child, you can make a story page about what will happen or you can read through hospital information with older children (if they want to). When children don’t understand they fill in the blanks and can imagine things are far worse. Young children have ‘magical thinking’ and might need help learning about what will be happening. Always encourage questions, be led by your child’s curiosity and make a safe space to answer these. Clinical Nurse Specialists, Play Specialists, Psychologists in the cardiology units can always support these discussions. There is also the fantastic Tiny Tickers resource ‘Our New Heart Baby’ – a book to help you support your children with their sibling’s heart condition.
- Include your child as much as possible: invite them to the hospital and encourage visiting, drawing their sibling a picture or card and bringing a toy or game to show them. They can record a voice note and even read them a bedtime story. Use of video calls can be really beneficial and it always helps for children to see their brother or sister to help their understanding.
- All feelings are valid: you don’t have to be super-human or robotic in how you cope with your child being in hospital or your other child/children’s response to it – it feels very hard because it is very hard! Trying to sugar coat things or be unusually jolly can sometimes seem disingenuous, even to young children. It can also prevent older children from feeling able to share their own upset. Allow yourself to be and feel upset in front of your children and be honest about why this is…‘It’s been difficult leaving you today and I felt sad I couldn’t get you from school’. By naming your feelings you can help with emotional literacy and talking about feelings as a family. You can also role model what might help you and ways to get support to feel a bit better. Equally, it’s okay for your child to laugh and still have fun and for you to join them in this if you feel able to.
- Take care of you! You’ll understandably feel very tired, overwhelmed and worried when your child is unwell or in hospital. You likely won’t have the energy to parent a toddler, young/older child and be fully present and physically and emotionally available – this is understandable. You never have to be a perfect parent (there is no such thing!) only ‘good enough’ and do what you can, when you can. Do ask for help (practical and emotional support) from close friends, family members, staff at school or your workplace. Don’t hesitate to delegate tasks and let people help where they can, usually people want to be there for you.
Finally, talk about how you feel and know you can access confidential emotional support via the Tiny Tickers virtual peer support sessions.
