End of Life / Hospice
Incompatible With Life: 5 Things I Learned in Infant Hospice

Give InKind is honored to feature Amie Lands.

Our daughter was born in 2011, following a healthy pregnancy. Initially there was no cause for concern, but soon after birth, doctors discovered she suffered from a chromosomal abnormality that left her “incompatible with life."

These harsh words would forever change our world. We felt lost, devastated and heartbroken, with no idea of what we needed to do or who to ask for help, leaving us alone to make the impossible decisions regarding the fate of our beloved daughter.

Thankfully, we were encouraged to transfer her to George Mark Children’s House, a pediatric palliative care facility for end-of-life care, more familiarly known as a hospice. At that time we had no experience with hospices and didn’t know what to expect as we entered the facility, but we quickly learned what a beautiful gift we had been given.

The hospice care provider was able to provide the quality medical treatment our daughter needed, as well as tend to our emotional needs, all the while ensuring her comfort while we awaited her imminent death.


Although we didn’t know what to expect, here are 5 things I wish I would have known when my daughter entered hospice care:

Our family would be loved. Although our nurses tended to the medical needs of our daughter, we quickly learned that hospice care included and involved our entire family. With each visit from our nurse, we had conversations about how our family was coping and what they could do to help support us. We were included in our daughter’s care, encouraged to be well-informed, respected when we needed space, and given room to live peacefully as a family.

We would smile more than cry. Because our daughter’s life was short, it was important that her every day be filled with joy. We were aware that we would have a lifetime to mourn her death, so we couldn’t imagine wasting a moment while she was here. That didn’t mean we never cried, it meant that we lived in the moment, as present as we possibly could. Every moment holding her was a reason to smile because the fact of her life brought a light of joy that lit up any room.

Life would be celebrated. Because our daughter was an infant, we were encouraged to create as many memories and experiences with her as possible.  Every morning upon waking, we would ask ourselves, “What should we do with her today?" and then we would do it.  We wanted her to experience as much of life as possible, all that we could offer. Because we didn’t know how long that time would be, we made every moment count.  That included walks outside, watching the sunset, listening to music, creating art and memorabilia, swimming in the warm pool, and spending time with grandparents, aunts, uncles and cousins. Even though we knew her time was limited, while she was here we lived it to the fullest. Our hospice created an environment where we could embrace every moment we had.

Dying would be a sacred experience. Facing the inevitable death of our daughter was terrifying. Even after having been present for the death of my beloved grandfather, preparing for the death of my own child was something unfathomable.  Our hospice nurses held our hands and our hearts through every moment while still giving us the space and respect we needed to help create a sacred experience during my daughter’s final days, hours, and minutes. They explained to us what to expect, how to identify the changes she was experiencing, and how to proceed once she died.  They were gentle, kind, and caring, and lead us through the most heartbreaking moments, all the while honoring our daughter, our family and our cultural preferences.

Support would extend beyond her life. After our daughter died, we desperately needed emotional support. The comfort we felt from our nurses helped reassure us that our daughter’s life mattered even though it was short, that she was important and would always be remembered. Hospice care and the bereavement counseling we continue to receive have helped shape our experience of grief. I know without a doubt that our healing is a direct result of the support we received during our daughter’s life and after her death. And for that, we will be forever grateful.


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