Articles and Updates from Phoenix Children's
She has always been a part of my life even though I never got to meet her. She was, and still is, my big sister Windy, and she only lived for a few minutes after she was born. The limits of medical knowledge and technology could not help her to overcome the fragility of her very premature body. Although her life was very brief, Windy left indelible mark on my parents, my sisters, and me which in subtle and not subtle ways still has effects decades later.
My family is not alone; in the United States alone, tens of thousands of families experience the death of their babies through pregnancy or infant loss. As many as 10% to 20% of known pregnancies end in a miscarriage - mostly because there is a problem with fetal development.
No fault, no blame
Babies less than 1-year-old have the highest mortality rates in pediatrics with the most common cause of their deaths being a malformation that they were born with or a genetic abnormality. In most cases of pregnancy or infant loss, parents did nothing to cause their babies’ conditions and could not have done anything to prevent them. Despite this, families often blame themselves and may feel isolated - often because, these losses and the grief they cause are hard to talk about and so rarely acknowledged.
Help along the journey
I have the honor of meeting wonderful families both before and after their babies have been born who have been given the news of a pregnancy complication or that their baby has a potentially life-limiting diagnosis. In my work as a palliative care pediatrician, I get to know families and talk with them about what is most important to them for their babies and their families, to hear their hopes and their worries about the journey that they are on. In these situations, there are times when our medicines, surgeries, and technology can help their babies to overcome their medical conditions, and we rejoice with the families. But, there are also times when what we have to offer either comes at too high a cost, does not honor the values and what’s most important to the family, or, like for my family, our medical knowledge and technology are just not enough. In these times, we walk alongside the families and try to focus on what’s most important in the precious moments that they have with their baby. And, after those moments are over, we share in the sadness and continue to walk with them, offering support as they start on their own personal journey of grief and loss.
Additional resources for families:
- Heaven’s Hummingbirds - Perinatal bereavement support group in Gilbert, Arizona.
- The Compassionate Friends (TCF) - National organization offering support groups for bereaved parents, grandparents, and siblings. There are local chapters in the central, east and west valleys of Arizona.
- New Song Center for Grieving Children - Provides grief support for families grieving the death of a child.
- Share Pregnancy and Infant Loss Support - Provides support and information for families who have experienced the death of a baby through early pregnancy loss, stillbirth, or in the first few months of life.