People with Down’s syndrome and their families are best placed to provide parents with a diagnosis with support, accurate information and knowledge based in direct lived experience.
If you are considering screening, or face a diagnosis, we would love to hear from you. Please contact one of our regional representatives.
Parents who are receiving prenatal health care have entered into a relationship of trust with a midwife or other medical professional for nurturance and support of their wanted pregnancy. We believe that nurturance, health care and support should remain the focus if there is an unexpected diagnosis. When faced with a diagnosis, this is the first moment we are called to be true parents and provide unconditional love and support to our children. We believe that the inherent dignity and value of that wanted child does not change as a result of a diagnosis. We are here to provide compassion, love and support in these situations.
The following websites provide excellent information and support around the reality of life with Down Syndrome.
New Zealand Down's Syndrome Association (NZ)
The New Zealand Down’s Dyndrome Association is a family/’whanau driven organisation. The NZDSA is a support organisation for families. They can put you in touch with families with a member with Down’s syndrome.
Spina Bifida Assiciation New Zealand (NZ)
Spina Bifida Association New Zealand are a non-profit organisation dedicated to supporting and encouraging parents expecting a baby diagnosed wiht Spina Bifida and parents of children, young adults and adults living with Spina Bifida.
Parent to Parent (NZ)
Matua ki te Matua (Parent to Parent) is a support and information network for parents of children with special needs. Parent to Parent seeks to support, educate and empower families who have a child or family member with disailities, health impairments or special needs.
BeNotAfraid.net
BeNotAfraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis.
Down's Syndrome Diagnosis Network
We are women from all over the United States who each have a child with Trisomy 21 (Down’s syndrome) and a great desire to ensure women who receive a DS diagnosis are provide with current information and support.
Down's Syndrome Pregnancy
Down’s Syndrome Pregnancy is a program administered by the Human Development Institute at the University of Kentucky to provide honest, compassionate, and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis.