"Our connection is beyond our bodies" - Jean's story

At 20 weeks pregnant with Jean we were told that she was “not conducive to life”. Our paediatric cardiologist advised us that we could terminate on medical grounds or pursue successive surgeries with minimal chance of success. Jean’s system was so complicated that it was unlikely that she would survive much longer than a few hours after her birth.

My husband asked the poignant question of whether it was possible to palliate Jean. The clear answer was yes and it took us on a rare journey of opportunity with Jean.

Jean survived a beautiful home birth with her family. Jean Bernice Gotch was the embodiment of love.

We invited our family and friends to come to meet her on her birth-day. We baptised Jean and invited all those who came to also bless her with holy water. A Wurundjerri elder and friend came to give Jean a traditional blessing.

Each day was a gift and we did not know when to expect her to die.

Our other children aged 3, 6 and 8 years old were engaged in the care of Jean. We told them from 20 weeks of pregnancy that our time with Jean was “now”, during the pregnancy and each day. They knew that she would not live for long and we supported each of their journeys in accepting Jean’s death.

Each day held more meaning and we were grateful for whatever time we had with her.

At 10 days old she had her first experience of long pauses in breathing, sometimes lasting over 5 minutes. My husband and I held her against our hearts through the night, she took large gasps of breath.  After many hours we put milk on her lips and she eventually returned to breastfeeding, continuously for hours. This also happened at 3 months old and 6 months old.

In these experiences of death we felt the presence of Divinity. Jean was held in loving arms. Afterwards she seemed to shine.

Jean would look at us like she could read all our secrets, deep into the soul with an accepting love.

Jean never entered the medical system for surgery. We believe that if she did she would not have survived. She lived for the love of her family. It was in our arms that Jean thrived and we could read her needs. Her siblings were always close by and she lived a fulfilling family life with us. She frequently smiled from 6 weeks old, laughed (particularly at her siblings) and even rolled over.

My husband, as a palliative care nurse consultant, undertook the day-to-day medical care of Jean. She was on a monitored dose of morphine with our GP. Our homebirth midwives visited often also supporting my mental health and communicating with the Paediatric Palliative Care service. Very Special Kids Family support also made a connection with us and supported us.

When Jean was 6 months old, we were in contact with a Death Doula who visited us weekly to do anything we needed assistance with, housework, cooking, or caring for our other children. The support we received was invaluable.

Our family and community were surrounding us in a circle of love and were present whenever we called on them.

Jean eventually died at 10 months old with my husband and I at home. We held her in the quiet of late at night talking with her, accepting that this would be the last time that she would die. It was a beautiful death. She was filled with Grace.

We kept Jean at home in her cot until her funeral day 5 days later. It was an extraordinary time of caring for her sacred body and being able to let it go into the earth.

I continue to feel Jean with me in Divine mystery. In openness I feel our connection that is beyond our bodies.