This commentary is partly funded by CHILD-BRIGHT.
Huamei Kang, Parent With Lived Experience (PWLE), Canada – I was born and grow up in Northern China, and am ESL. I came to BC, Canada as an international student in 2008 and became a mental health counselor. I built a mixed-race family with my partner in New Westminster and we have two children. My first child was born in 2022 and diagnosed with Leukodystrophy. I am also a member of the Family Advisory Committee for Canuck Place, the local children hospice.
Feature Article
Houlihan, B. V., Coleman, C., Kuo, D. Z., Plant, B., & Comeau, M. (2024). What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change. Pediatrics, 153(Suppl 1).
Commentary
From a parent Journal Club on the topic of Family Well-Being we read an article titled: “What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change”. To quote the abstract here again, “Families shared that valuing each child and creating opportunities for the child and family to enjoy their lives were most important in addressing human dignity in systems of care. They recommended centring the whole child, building relationships of trust and communication, and valuing family-to-family support to transform the system of care aligned to humanism in care. Families express an urgency for systems to uphold the dignity, valuing their child as a whole human being whose quality of life holds meaning and joy, not just as a diagnosis”.
Families of children with medical complexity (CMC) are made of many families with diverse backgrounds and unique intersectionality. It is not clear in this article the age of the research participants children, when they received a diagnosis, or whether they have more children. For myself, and my experience, I am a mother of a 2.5-year-old boy with medical complexity and life-limiting condition, with no particular religious background. Despite using In vitro fertilization (IVF) intervention, we seemed to have a smooth and promising pregnancy. However, our oldest son (and only child at that time) appeared unwell from the moment he was born and was admitted to the NICU immediately. After three months of investigation, we were devastated to learn that his diagnosis is leukodystrophy, a rare neurological illness that is degenerative and impacts his life span. He had extremely low muscle tone and could not lift his head, swallow well or move his body voluntarily. We were told that he would not be able to stand, walk and speak with other unknown prognoses.
If being a parent of CMC is a journey, we were on the very beginning stage.
Cognitively, being a first-time parent, especially someone who was excited and ready to celebrate our new life with the first baby, this news is not anything close to what we had envisioned of our parenthood. Our old beliefs about how our world functioned were completely crushed. Among endless losses, we lost our identities.
We did not know how we were going to handle the pain. How are we going to experience joy? How are we going to carry on in this life? How did other families with life-limiting conditions survive? All these seemed impossible to us. Sadly, when we requested to connect with other families with CMC with similar situations, there was no such peer group available, even through the local children’s hospice, at that time.
Our nervous system was flooded constantly. I recall the rawness in sharing the news with our families (both in Canada and in China) and our support systems. When to share, how to share, who to share to first and whether we need to share? We felt extremely vulnerable and exposed. Most people do not know how to receive news like this and to respond in a helpful way. Along with devastation and disbelief, shame was experienced. I had little capacity to see my baby’s value other than tragedy.
I was often confused hearing doctors in the NICU say, “You know your child the best.” I just met this child. Who is this child? I was in a shocked state. It is a new baby, there was not much narrative around who he is other than his gender, his name, his physical appearance (covered by CPAPs most of the time) and baby clothes. Most of the talk about him was about his diagnosis, symptoms, tests, and prognosis. The potential problems in those narratives were further taking the attention away from seeing him as a whole human being.
On rare occasions, I appreciated and found comfort in doctors who sat with us patiently, with our gigantic emotional waves, listening and talking from a humble fellow human’s perspective. I recall hearing words like “life journey” “we don’t know, and we have to let him to tell his story,” “every child is special. They have a unique story” and “his eyes seem to penetrate your soul” comforting. I recall hearing a doctor (from the hospice) asking us questions about our families’ values and visions, and this helped us to see a glimpse of what we could hold on to.
“The only thing we can control is how much we love you” is a phrase I use to shift my focus. Despite us knowing we want to love our children, I did not know what loving him would look like. Being able to console him when he was upset and knowing he was relaxed from being held gave me a moment of knowing. Nevertheless, we had limited references on what else we can do with our child to show our love and connect with him. Why does it matter to read a storybook to him? Will he understand it? Does he have a favourite color? Does he have preference and ability to make a choice?
When we were discharged, figuring out a meaningful interaction with our complex four-month-old baby was like finding a path in the dark. There was not much obvious social interaction (e.g seeing him reaching for things or having eye contact) to work with. When it came to feeding, it looked especially mechanical and distant. My child was receiving formula or pumped breast milk through G-tube via feeding pump. We did not get to try to latch him. When it is time to introduce solid food for his developmental stage, we were told taking food orally was dangerous for him. The talk was heavily about taking care of a G-tube stoma, volume, rate, intervals, calorie, and safety instead of the pleasure, and social meaning associated with eating. It has been a consistent battle with medical professionals to negotiate what is a reasonable risk to take for him to simply taste food. The days were long. He would smile sometimes and my partner and I held on to those brief inputs from him as a reward, to locate the path to enter his world.
Attending community programs (e.g baby swimming class or the library’s story circle) often reinforced a sense of isolation, deficit and shame rather than a sense of belonging. Programs structured for typically developed children created an ongoing process to work through with the comparing mind. We did not know how to be. We did not know who was there in the community that would accept, value him, and establish ways to meet him where he is at and support his growth. Most importantly, we barely knew who our child was, or how to appreciate him and delight in his being.
I agree with this article’s mention that we want health care providers to see our children from a big picture and to see them more than their conditions, as I believe this is crucial to also help families to build and/or reinforce their children’s identities. Over time, I have picked up phrases and languages from our health care providers (therapists, doctors, nurses), friends and other families of CMC to recognize, name and appreciate a child like ours’ with value. We learn from the service providers’ being with our child (e.g the delight in seeing him, taking time to chat with him,) that our child matters, and they model to us ways to engage with our child too. My narrative about who he is and our journey with him has been expanded.
As our child grows, so do we as parents for CMC. Now, we are a couple of years on this journey.
Our child has given us more inputs and his personality seems to be emerging. We have gone through more circumstances like participating in various community groups and programs, respite stays at the children’s hospice, traveling, joining in daycare, and spending holidays and different seasons together. We have more stories to describe who he is and construct his identity. We have been continuing to pave a path to know our son and know how to be with him. We see him relax in the water, so it urges us to go to the pool often. We hear him smile and giggle at certain sounds, and it has drawn us to music class. Despite endless unknowns, we have more knowledge than before on what motion comforts him, what game he likes, what music brings joy, what medical test will upset him, and how different environments impacts him. I know we have collected many moments of delighting in his being, merging in his joy, and seeing the world’s hidden wonders through his senses. We have more stories from other people, sharing how our child has been deeply touching them in a unique way. Our understanding about time, life, and love has been opened through encounters with many people and agencies. All of this originated by him coming to our lives.
A doctor from the Canuck Place told me it is an extremely complex process for the universe to make a life. Reading the stories from our IVF community, I was reminded that it is a true privilege to bring a child to this life. I move close to him and listen to my child’s heartbeat sometimes, and I am just grateful for the life force. He is here with us in the same space and we are part of each other’s life and our intertwined journey is a part of the web of human existence.
View the 2024 Special Issue #4 Citation List in Library