It is a long, complex journey when a family makes the choice to carry to term after receiving a terminal diagnosis. Everything changes – hopes, dreams, desires, the way plans are made – both simple plans and complex ones. Making choices, setting dates, and determining arrangements can be taxing. All you really want to do is spend time loving your baby and focusing on the positives.

For families pursuing donation, there can be extra challenges as they navigate the unknown and discuss end of life matters. To help parents through this part of the journey we have created two new resources: the Neonatal Donation Preliminary Information Document and the Request to Contact Organ Procurement Organization.

The Preliminary Information Document was created as a tool to help the parent communicate with their local organ procurement organization (OPO) and provide all the necessary information about their pregnancy, their baby, and their desire to donate. The family can print the form, fill it out, and give it to their OPO, or they can use it as a guide when creating their own form. Having all the key information in one place will help the process move forward quickly and easily and may minimize potential back-and-forth conversations with the OPO.

The Request to Contact form was created for parents to use when it is necessary to ask their Obstetrician/Midwife to contact the OPO to coordinate plans prior to a donation. This form lets the medical provider know that the family wishes to pursue donation and gives permission for the provider to communicate with the OPO.

Both of these forms can be found under the Donation Steps and Resources tabs on the website, as well as the links above. Although these forms do not eliminate all the paperwork and they are not meant to replace legal paperwork from the OPO/Medical Provider, they can help facilitate communication which gives the parents an opportunity to be proactive and makes the process a little easier so they can spend more time making memories.

To the families carrying to term: we know from personal experience how difficult the process can be and we truly desire to make things easier. Please feel free to contact us if we can help in any way! We would love to support you through your journey.