When a child is diagnosed with a serious, life-limiting illness or has a complex medical condition requiring long-term care and treatment, facing this reality can be tough for patients and their families.
Whether it’s helping families understand their child’s illness and treatment options, coordinating their child’s inpatient, outpatient or in-home care, or assisting patients with pain management and other challenging symptoms that often accompany serious illnesses – emotional, psychological and spiritual distress – Texas Children’s Pediatric Advanced Care Team (PACT) is ready to support them 24/7.
Our interdisciplinary team consists of physicians, physicians in training, nurses, nurse practitioners, a chaplain, social workers, a grief and bereavement specialist, pharmacist, researchers, and administrators – all who are specially trained in pediatric palliative care. Texas Children’s PACT provides holistic care, irrespective of prognosis, to infants, children, adolescents and adult patients with serious illness. The focus is on maximizing quality of life and supporting patients and families through long hospitalizations and complex medical care.
As the grief and bereavement specialist at Texas Children’s, I’ve seen patient families grieve and struggle over the thought of their child dying. I’ve seen them cling to hope as their child bravely undergoes endless rounds of treatment to cure their disease – only to find out the treatment is not working. When curative care is no longer an option, that’s when I can step in to help.
Admittedly, it’s very hard to see what these families are going through as they anticipate the death of their child. As they go through this difficult stage of life, I am there to support, comfort and offer resources to help them navigate their grief. These include grief support groups where they can connect with other families facing similar situations and mentorship programs where bereaved families can mentor newly bereaved families at Texas Children’s. I am always available to lend a listening ear. Patients and their families appreciate it when someone is there to listen to them as they share their grief experience.
The most rewarding part of my job is the special bond I share with these families. To them, Texas Children’s is their second family, and my hope is to help bridge them into a new life without their child. My responsibility to these families is to help keep their child’s memory alive. My colleagues and I support them in many different ways: we send them a condolence card soon after their child’s passing, we send a birthday card for the first birthday after their child’s death, and a one-year anniversary card. We send the families supportive mail, and I sometimes reach out with a phone call. Each year, we host a candle lighting ceremony to celebrate these precious lives gone too soon.
Dealing with death is never easy. People respond to loss in different ways and no two families grieve the same way. Before I became a grief and bereavement specialist, I was a Child Life Specialist in the Neonatal Intensive Care Unit (NICU) and Texas Children’s Pavilion for Women, and stood by patient families facing end-of-life care. Comforting these families who are grieving after the death of their child is sacred and meaningful work. Based on my experience working with them over the years, many parents have expressed to me how uncomfortable they are talking about death with their young children. Their number one concerns are, “How am I going to tell my other kids my child is going to die? or “How am I going to tell my child he or she is dying?”
My conversations with these families inspired me to write a children’s book about death. Kids as young as four-years-old are developmentally able to have a cognitive understanding of what death is and what it means. I wanted to create a resourceful book that would empower clinicians, parents and children to have this conversation – because quite frankly, even we adults, have trouble talking about death.
After signing on with a publishing company in December 2019, I began writing my children’s book in March – around the time when the COVID-19 pandemic began to spike. I never imagined the landscape of our lives would change so drastically as I started the writing process. Death became a common topic of conversation in people’s homes and around the world, and this pandemic reaffirmed my commitment to write this book.
Published in July 2020, A Kids Book About Death explains the practical aspects of death and navigates the nuances of emotion and community that surround this topic. The book talks about what causes death, what happens after death and the different stages of grief. Instead of using illustrations, typography is used to allow children to think through each of the words, topics and concepts about death and what it means to them, personally. Finally, the book ends with an uplifting message for parents and children:
Death does not end the relationship. Instead, love continues to grow. That’s what I want children and adults to take away from this book – you can keep the love growing in new ways even after death.
Click here for more information about Texas Children’s Pediatric Advanced Care Team (PACT) and the palliative care services we provide to our patients and their families during life’s difficult moments.
The author discloses the following financial relationship: royalties from A Kids Book About™.