Joan's Reach was started in memory of our daughter Joan Louise. Joan spent nine months with us in 2011 and we embraced each day she was with us, knowing it might be the only time we would have with her. Halfway through my pregnancy with Joan, we learned through routine tests that she had a rare chromosome disorder called Trisomy 18. We were told that Joan would likely not survive and were offered termination of the pregnancy. Information to guide us in continuing the pregnancy was very limited. We were disappointed by the lack of understanding, options and support offered after Joan's diagnosis.
When doctors told us that our daughter’s life
would be brief we were devastated. But
as we watched Joan’s little hand reach out on the ultrasound screen we knew we
would love, comfort and care for Joan the entirety of her natural life, however
long it may be. What we instinctively
embraced as parents is a model of palliative care called perinatal hospice. Driven by the strong instinct to parent our daughter – to provide comfort and care for her, even if only for a short while – we found compassionate individuals and resources to assist us. And we discovered a profoundly meaningful journey with Joan. Inspired by the many lessons Joan taught us and so many others in her short time on this earth, Joan's Reach was born.
Through Joan's Reach, we hope to raise awareness of perinatal hospice care within the local medical community, so that families facing a life-limiting prenatal diagnosis will receive detailed information about the option to carry to term, as well as support throughout their pregnancy.
Joan's Reach provides:
- Advocacy
- Peer support
- Family care packages containing books and references
- Resources for perinatal palliative care teams at local hospitals
- Referrals to professional resources for birth planning and bereavement support