The Stories We Don’t Always See: The Diverse Parenting Experience for Families Living With Congenital Heart Diagnosis (CHD)

A diagnosis of a congenital heart condition changes so many things about family life. Parents may find themselves feeling a complex emotional landscape, where joy and fear both live in their moments and memories. I know this both personally as someone born with congenital heart disease and professionally as a registered clinical counsellor who works to support families through medical experiences and diagnosis.

For many parents, the medical journey is not one clear emotional path. It is often unpredictable and can feel invisbile in normal daily moments. For my own mother, the unknown was quite scary and she shares with me now how challenging it was for her not wanting me to know and feel her fear. She wanted me to have as normal a life as I could. She put her hope in doctors and medical knowledge even though sometimes it was hard to trust.

 I was born with congenital heart disease, and my mother’s experience in the 1970s was shaped by a very different world. There was far less public conversation about paediatric medical trauma and there were no online communities for her to access to find out more or connect with others. My mother only knew of one other family who had a daughter 5 years older than me with CHD. 

The photo above was my mother and I before my she knew what was going to happen. She knew I had something wrong with my heart, but had no idea what my path would be.

In working with families and parents now in my counselling office, I hear them share their feelings about how one moment is filled with thinking about feeding, sleeping, names, school pickups, work, siblings, and the ordinary rhythm of family life and the next moment narrows into health concerns like getting a virus, oxygen levels, echocardiograms, surgery dates, medications, and the ongoing questions: Will my child be okay? How will they be impacted?

A common thread throughout their stories is that they sometimes feel their friends and families do not see or understand the complexity of their experiences. At other times, they want it that way, allowing them to maintain some sense of normalcy and carry on with their lives. And sometimes, they would like for others to know more about their story.

My mother parented me in a time when there was less language for what she had endured. She did what many parents of the 70s did. She kept going. She loved, worried, watched, and tried to make sense of it without the supports many families can now reach through the internet, counselling, peer groups, and trauma-informed care. Families I work with now often share that there can be both so much information and too many stories to take in. Yet sometimes, at 2:00 a.m., one of those stories is exactly what a parent needs: a story that helps them feel less alone, less invisible, and part of something shared.

The Emotional Responses of a CHD Diagnosis

For some families, CHD is diagnosed during pregnancy. For others, it comes suddenly after birth or during a checkup, feeding concern, blue spell, or unexpected change in their baby’s condition. Diagnosis can bring many emotions: stress, fear, disbelief, anger, sadness, guilt, acceptance, and gratitude. Each parent experiences these emotions differently, and they can be difficult to explain to family and friends who haven’t lived through the same experience.

A prenatal diagnosis may give parents time to prepare, meet specialists, and plan for delivery near a cardiac centre. Yet it can also change pregnancy, intertwining the anticipation of a baby with fear and grief for the pregnancy they imagined. A postnatal diagnosis can bring a profound shock. Parents may move from believing their baby is healthy to suddenly hearing words like “heart defect,” “cardiac ICU,” or “surgery.” This was when my parents found out at my birth, because I was born blue. This was an emotional time that they didn't process until years later.

 Parents may remember exactly where they were, who spoke, and the moment everything changed when they find out about their child's heart.

Welcoming joy with a brave heart: Celebrating the arrival of a precious baby with CHD.

Families may carry different visible burdens

Every parent is different, and no emotional response belongs to only one gender. Still, in many family stories, patterns appear. Some experience guilt or a sense of responsibility, wondering if they could have done something differently. Guilt can even arise when comparing their child’s experience with that of children who are more medically fragile. 

Mothers who have carried the child often share anger, sadness, loneliness, helplessness, numbness, and confusion. Some mothers describe feeling trapped between the role of advocate, caregiver, patient information keeper, milk producer, post-birth healing body, and emotional centre of the family. If the baby is diagnosed shortly after delivery, the mother may be recovering physically while also trying to understand life-altering medical news.

That is a lot for one nervous system and one family.

Some parents may feel shock, fear, and helplessness too, but sometimes express them through doing. They may focus on looking after the other children, working, managing finances, asking technical questions, or staying “strong.”

It is common for parents to misread each other during this time. This experience shows up a lot in my clinical practice when parents see their partner's responses and put their own story on their actions. One parent may cry often. The other may become quiet. One may want to talk through every update. The other may need silence. One may research late into the night. The other may avoid reading because it increases panic.

These differences create tension, especially when both parents are exhausted.

Some people move toward information. Some move toward action. Some freeze. Some cry. Some become irritable. Some go numb. These are all natural responses to stress.

Mixed emotions can feel confusing, but they make sense.

A parent can be grateful to the surgical team and still feel traumatized by seeing their child intubated. A parent can love their baby fiercely and still feel exhausted by medical caregiving. A parent can feel hopeful and still be scared to sleep.

The body often stays on high alert during medical interventions or appointments. Even after discharge, that alertness may continue at home.

This can look like:

• Constantly monitoring for signs that something might be wrong

• Feeling anxious when their child has difficulty eating, sleeping, exercising, or keeping up with peers

• Struggling to fully trust reassuring test results or good news

• Feeling on edge before appointments, procedures, or changes in their child’s health

• Experiencing intrusive memories of hospital stays, surgeries, or difficult moments

• Feeling detached, numb, or emotionally overwhelmed

• Becoming overwhelmed, irritable, exhausted, or stressed by daily life

• Feeling guilty for focussing on another child

When I read this list to my mom, she added the feeling of guilt that a parent did something wrong during pregnancy that impacted their child's heart. This is something she just recently began to understand about her experience.

All of these responses can be part of acute stress. For some parents, they ease with time and support. For others, they may become signs of anxiety, depression, post-traumatic stress, or complicated grief.

Tools for Parents Living With Ongoing CHD Anxiety

For parents of children with CHD, the body and mind can remain on alert long after a medical crisis has passed. These emotional responses are understandable and sometimes unconscious and can also become exhausting. Here are some practical ways to notice these patterns, regulate the nervous system, and make space for both hope and uncertainty.

• Notice the alarm without immediately responding to it

  Constant monitoring can become a way of trying to create safety. Pause and ask: “Is there something happening right now, or is my nervous system remembering what happened before?” This can help create space between a fear and an immediate response. Using your senses (particularly your vision) to notice what is happening can give you information you might have missed when feeling panic. For example, if your child falls off a bike, notice the scrape and let yourself know that is what it is. A scrape can sometimes unconsciously feel like a medical event when you have had one in the past.

  
  

• Use your body to help your nervous system settle

  When anxiety rises, try to feel your body sitting on the couch or your feet on the floor. You can try naming things you see or feeling the heaviness of your hands beside you. If you are comfortable with breath work, notice your breath and try to exhale longer than you inhale. The goal is not to minimize your feelings of panic or fear, but to remind your body that this moment is different from the moments of crisis.

• Make room for both gratitude and fear

  Parents do not have to choose between being grateful for their child and being afraid of what the future may hold. Both can exist. Give yourself permission to feel joy, attend to another child, rest, or enjoy an ordinary moment without seeing it as neglect or taking something for granted. I frequently suggest to clients to build a photo wall of beautiful moments for the whole family to see and remember the moments of happiness, connection and celebration.

  
  

• Share your Story

  Sharing your CHD story how, when, and with whom you choose, can be a powerful part of healing from the complex experience of parenting a child with complex health needs. You get to tell your story on your own terms, giving words to experiences that may have felt overwhelming, frightening, or impossible to process at the time. Sharing can help you feel less alone, connect with people who truly understand, and remind you that your experiences matter. There is no right way or right time to share; sometimes healing means speaking openly, and sometimes it means simply knowing your story is yours to share when you feel ready. Sharing can build resilience in your family and trust that you have done hard things and gotten through them.

Carrying on with our CHD Story: My mom and I

This article is for information and reflection only. It is not a substitute for medical advice, mental health care, or emergency support. CHD care and emotional healing both deserve qualified support.There is no perfect way to move through CHD. There is only the next step.

The goal of healing is not to erase the CHD story. It is to help the family carry it with less fear and more support.

When the experience feels too heavy to carry alone, a counsellor can help parents process what they’ve been through. Support may include grounding skills, nervous system education, grief and trauma work, couple communication, and managing ongoing medical anxiety. There are many trained clinical counsellors that you can find through the BCACC website, your doctor, or through Children's Hospital.

Extra counselling support may be helpful if a parent is:

• Experiencing frequent panic or severe anxiety

• Unable to sleep, even when there is an opportunity to rest

• Feeling persistently numb, detached, or hopeless

• Avoiding necessary medical care because it feels triggering

• Reliving hospital experiences

• Carrying intense or ongoing guilt

• Struggling to bond with their child

• Having thoughts of self-harm or not wanting to be here

  
  

If there are thoughts of self-harm or immediate danger, seek urgent help through local emergency services or a crisis line.

For more information about my private practice go here https://www.handstoheart.online/