Richard Hogan: My daughter came to see the new baby in ICU. She sat cradling her sister singing, 'You're not alone'

Many families experience the trauma of living with a child or sibling that is seriously ill, just like we did.

Wed, 16 Nov, 2022 - 20:00

Richard Hogan

In 2017 my youngest daughter, Sophie was born with a life-threatening condition. She was two pounds and six ounces, at birth. She spent the first six weeks of her life in an incubator in the Intensive Care Neonatal Ward with the incredible nurses and doctors of the Coombe Maternity Hospital and the next six weeks in ICU in Crumlin Children’s Hospital.

Our only contact with her in those early tentative days was a process called, Kangaroo Care. Where we were allowed to hold her, skin to skin, for a limited time.

It was one of the most difficult times in our life, as a family.

My wife and I would take turns going up to see her in ICU, while our other two kids waited outside in the carpark. Even with all my training in psychology and psychotherapy, we just put our heads down, shoulders back, and beat our way through the waves, hoping for a positive outcome.

We didn’t talk much about what we were going through.

We were living on a day-to-day basis for the first six weeks. Every time the phone rang, a profound silence descended over the house. And when she came home, we were so thankful that she had survived, we just moved on, not really processing what we had been through.

But from time to time it came up. In 2019, two years after Sophie’s arrival, Ryan Tubridy interviewed young Sophie Barnes Aabo on The Toy Show. He tenderly interviewed her about her brother Cian’s illness. As Ryan’s words left his mouth, "If I was Cian, I’d want a big sister like you". My eldest daughter Hannah turned to me, tears spilling down her face, ‘that was Sophie’. We all hugged and cried.

Of course, Sophie was looking at us thinking we had lost our minds. One of the most poignant moments in my life was when Hannah came up to see Sophie in the ICU. She asked if she could hold her sister, the wonderful Filipino nurses obliged, and Hannah sat cradling her little sister singing, ‘You are not alone’.

I’m emotional now recalling that moment. Whenever that song comes on the radio Hannah and Sophie give each other a knowing little smile. Lizzy, too, doted on her little sister, always offering to give her her food. Putting her little sister's needs ahead of her own.   

Many families go through similar experiences every day in this country. Many families experience the trauma of living with a child or sibling that is seriously ill.

And many families struggle to move back to a normal pace of life after the illness has gone from their lives.

I often meet those families in my clinic. The child has survived a life-threatening illness and the family is now trying to understand what they have been through and how they can start to live a normal life again. I often think there is a negative idea in the system or a survivor prejudice, it’s almost like we tell families, "You are the lucky ones to survive, what have you to complain about". I hear parents, too, grappling with the same internalised prejudice.

They feel almost ashamed for how they are feeling. Like they are selfish for even wondering if there are supports for families having survived a serious illness. But the brutal reality remains, many of the medications used to save the life of a child or adult, unfortunately, often leave that child or adult with severe problems, organs can be damaged and cognitive processing can be impaired, so the family are often left dealing with how to return to a normal pace of life with a child that has been seriously impacted by the medication used to save the child’s life.

And, for too long, families were left on their own to figure this out. They were also made to feel that they should be grateful that their child had survived, and to just get on with it.

Thankfully, things have started to change.

Last week I spoke with Patricia Mc Colgan who is a director of the charity, Childhood Cancer Ireland. They provide much needed supports for families attempting to put their lives back together after illness. Families need support and they need to talk about what they have been through and how they can support their child or sibling whose life has been irrevocably changed due to illness and the impact treatment has had on their body. The Government needs to really take a look at how families are supported after illness, for too long these families have been voiceless and left on their own. Most of the volunteers working with Childhood Cancer Ireland have experienced this issue first-hand and understand the nuanced complexity of putting lives back together after serious illness interrupted it. 

As Laura Cullinan (member of Childhood Cancer Ireland and parent of a survivor) explains: "A diagnosis of childhood cancer has a devastating impact on the entire family. Thankfully, more and more children survive cancer but the survivors live with long-term and late effects from the toxic treatments required to save their lives."

As we move towards Christmas, families excited for all the possibility that will bring, we must remember, there are many families, today, trying to comprehend how to move on now that their loved one has survived a life threatening illness.

We have to get better as a society dealing with the aftermath of experiencing a serious illness. We must talk more, it is in the shared experience that we learn how to move on and thrive again. And when a child is impacted by the medication used to save their life, that family needs particular specific supports so that they are not left alone to figure out how they can support their child with their new future. 