I’ve heard it said that becoming a parent is like having your heart walk around outside of your body. I’ve left my heart in an operating theatre twice in the past six months, after unexpectedly becoming the mother of a brave little ‘Heart Kid’ (a child born with Congenital Heart Disease - CHD).
My son Raffy was born in June 2018. I was already a mother to a healthy child, but the arrival of a medically complex child can present an additional set of realities and challenges to your standard parenting experience. This time, our first days of getting to know each other were disrupted by confronting consent forms, constantly alarming monitors and big fears of loss, and by medical professionals who could take better care of his heart than I could – irrespective of all of the love I had for him in mine.
Some months later, the unexpectedness of my son’s start still had me spinning. Despite being a psychologist, I felt completely ill-equipped to navigate the seas of my own distress. For me, psychological support was imperative in adjusting to life as a parent of a child with a chronic health issue. I unequivocally encourage anybody navigating life with an unwell child to seek out such support. This article will touch on my personal experience, and some of the strategies that helped me manage those early days.
Enacting Survival Mode
Unexpected diagnoses give you no chance to prepare for what is to come. Raffy underwent his first surgical procedure at just three days old. Within the ‘heart community’, it is often suggested that parents prepare for such procedures by speaking with medical/surgical teams, visiting the Pediatric Intensive Care Unit (PICU) where their child will receive care, or looking at photos or YouTube videos of other children post surgery, to prepare for the volume of leads and monitors or the prospect of seeing their child with an open chest. While these suggestions are likely helpful from a rehearsal and desensitisation perspective, not everybody has prior knowledge about their child’s condition. Personally, I went from holding a ‘healthy’ baby to being unable to touch him – from planning to bring him home, to being uncertain whether I would even get to. My sense of fear, worry and anxiety was overwhelming. However, I recall the lovely PICU Social Worker Liz Crowe (she is incredible – look her up) asking a question that helped me enormously. It was something along the lines of: ‘If you have the chance to reflect on this moment in years to come, what would you expect of yourself?’ My response was that I just needed to survive it. For me, this meant trying to bring myself out of my afraid mind and back to the present in whatever way I could: by speaking with my ever-logical husband, asking questions of the medical teams, sipping a coffee, eating three meals a day, and connecting with people I loved who would soften my fall, irrespective of the outcome.
Education, Understanding and Advocacy
Learning as much as I could about my son’s condition saw me well positioned to understand and communicate with medical professionals about his diagnosis, symptoms and prognosis. Keeping a file of documentation, a list of symptoms and questions for specialists ensures that I never leave an appointment with uncertainty. They say that knowledge is power. Indeed, education has directly facilitated my ability to advocate for my son when I need to. Navigating pending surgery and follow-up appointments can be a minefield, and I have found that my knowledge of his condition and its indicators allow me to confidently engage with his medical teams and request further attention when it is required.
It’s normal to grieve...
Considering I came home with a medically stable child, the extent of my grief reaction surprised me. After my initial denial, I moved quickly into a quiet disbelief that something like this could have happened to us, and started the futile exercise of seeking answers for why it was so. I was jealous of friends who were giving birth to healthy babies, and found it very difficult to be in the company of others, fluctuating between anger and incredible sadness, and landing often in emotional overwhelm. Prior to Raffy’s second surgery, there were many occasions when I would launch into a full account of my son’s cardiac history to unassuming passersby who called him cute. It took me a while to realise I was doing this in the hope that someone would be able to definitively tell me that everything would be alright. Of course, my search just ended in awkwardly tearful exchanges with well-meaning strangers, and none of the relief I was seeking. However, with support from friends, family and professionals, my grief has subsided over time. I still have moments when I wish Raffy had been born healthy and that we’d not had to face all that comes with a lifelong chronic condition, but I can now comfortably acknowledge it as our reality. It took some work to accept it all and drop the struggle, but doing so has freed up some emotional room for loving my son and making sure that I’m supporting him as best I can.
But you may feel horrible for doing so...
Though I did not resist my grief, there have been many moments where I have felt like a terrible person for feeling it. I recall crying in the hospital’s expressing room in the company of the mothers of other unwell children, only to feel like the most horrible human being when it became clear their child’s condition was that much worse than mine. My child was one of the lucky ones for whom intervention was possible, and both of his procedures have been uncomplicated in terms of execution and recovery. I came home with my child. I get to love him, tend to his needs and watch him grow: a privilege that so many are denied. I’m also lucky to know that everything is relative, and my reactions are as they are. I can struggle with that, or I can let it be. With work and support, I’ve learned to acknowledge my reactions with gentle acceptance and without self-criticism or judgment.
Communication is key
As the parent of an unwell child, navigating friendships as can be difficult. It can feel like friends fail to understand your experience, or compare their own child’s less significant health issues to those of your chronically unwell child. These friends are likely well intentioned: it can be difficult to support others through big struggles, and such comparisons likely arise from an attempt to connect or find common ground. For me, open communication about my needs, my frustrations and my emotional experience assisted my friends to understand where I was at without them needing to read my mind. At a practical level, catch-ups with parents of other kids can be complicated by a reluctance to expose an unwell child to potential illness. Communicating the potential implications of my child being hospitalised by simple viral infections, and inviting friends to advise/avoid us when they are unwell, has been a good strategy in alleviating the likelihood of my son becoming ill, and assisting me to maintain my connectedness to others.
Connect with a supportive community
Seeking out relationships and connections with other parents of medically complex children can be a means of developing a supportive network of others who have a lived understanding of your unique challenges and experiences. Personally, becoming an active member of the HeartKids online support community has assisted me to develop friendships with other parents of children with CHD. Such connections can serve to foster hope, normalise your struggles and assist you to develop a coping repertoire through shared knowledge and experiences.
Do what it takes to be ok
Research confirms links between parental responsiveness and developmental outcomes in childhood (Mahoney et al., 1998). Psychological distress has been associated with attachment disruptions, with longitudinal implications for emotional adjustment and self esteem in chronically ill children (Berant et al., 2008). Thus, it is so important as the parent of an unwell child to do everything you can to address your distress and establish the foundations of a secure attachment bond with your child. The most helpful thing another heart mum said to me when I was stuck in an emotional mess was ‘It’s about him, not about you’. It dawned on me that I could make a choice to stay stuck in my own fear and suffering, or get about making sure I was psychologically prepared for anything we might face. I worked hard with my psychologist to notice when I was in ‘lamenting-mode’ or ‘writing the movie’ and losing touch with the present – composing endings for aspects of life that remained unwritten. I distracted myself when I needed to enact survival mode, and made direct contact with my personal values around the edges of my distress. Additionally, I looked for growth moments: for me, these have included fundraising, starting a blog, and pursuing research opportunities to use my skillset to support other parents of children with CHD. Working out what you need to do to cope will position you well to support and love your child through whatever it is you have to face.
Berant E, Mikulincer M, Shaver PR. Mothers’ attachment style, their mental health, and their children’s emotional vulnerabilities: a 7-year study of children with congenital heart disease. J Pers (2008) 76(1):31–66.
Mahoney G, Boyce G, Fewell RR, et al. The relationship of parent-child interaction to the effectiveness of early intervention services for at-risk children and children with disabilities. Topics Early Child Spec Educ 1998;18:5–17.