"With compassion and sensitivity, we can each change the world...one person at a time."
If you are a parent, do you wonder if your baby's death will be in vain? Do you wonder if nothing more will come of this than sorrow and pain? Maybe you have too many regrets and frustrations with how you were cared for, feeling that changes need to occur. Or you wonder what can be done to reduce the loss of these precious lives.
If you are a family member or dear friend, do you find your self struggling to figure out your role and how you can make a difference to honor the sacredness of this little life that has now changed everything? Maybe as a care provider you wish to do more as you support people at the time of their loss.
There are many things you can do to facilitate changes that can help others going forward. You may wish to make a special items like bookmarks, blankets, gowns, or jewelry. Individuals and groups such as Lanee's Legacy, Tender Tears, Angel Baby Memorial (UK), Earth Mama, make up bags or gift baskets or boxes that might include helpful resources such as: a baby comb, shampoo, foot print kits, bead- making supplies, a teddy bear or other stuffed animal, a poem bookmark, picture frame, and other sweet mementos like stamped jewelry from Held Your Whole Life.
I feel strongly about the importance of including a small book in gift baskets if the hospital does not already give a resource such as Empty Arms. It is critical.
Many parents have regrets, sadness, and anger after their loss. They may have received amazing gifts and mementos, but do not have the understanding and guidance in the all important decision-making. They lack--
Getting involved in something positive and productive might be the thing to do. Many of us have, and it changed our lives. Be thoughtful and careful about jumping into or starting something that recreates wheels which then becomes competition for existing groups and organizations. We all need to be working together, in communication with each other as much as possible for the good of the cause, so we can focus on building awareness and offering service to families.
There are many, many nonprofit organizations, groups, and websites which give you ways to honor your baby, to donate money to, or to give time to an initiative that is close to your heart. Sometimes it is very hard to locate these resources. A recent listing I like is Grieve Outloud which lists so many resources such as belly casting, jewelry, dolls, blankets...
Sometimes parents think that because they did not receive certain services or care, that it does not exist at all, and they must now create something new. Rarely is that true these days.
You would be amazed at what service projects and groups are out there doing things that you never knew about—dolls and bears made up to be the the weight of your baby (Molly Bears), stuffed animals made out of your baby’s clothing and blankets, peer support and parent advocates waiting to help the newly bereaved, personalized jewelry makers (like My Forever Child), stone painters, heart sewers, pillow-making people (Heaven Born for miscarriage), memory-box makers, authors (there are books for almost every subject on this topic waiting to be discovered), research and education groups, story-sharing sites, support groups, chat groups, blogs, Facebook groups, foot/hand print kits, music and funeral planning resources... Consider starting here before starting something new. Check out our Resource Link and then visit the web.
An example is the Sweet Pea Project which donates blankets to hospitals. They have a number of chapters. Parents could align with them and create their own chapter, or just simply work with them, rather than start a whole new entire nonprofit organization with all the complications, boards, paperwork, and need for ongoing money. Another example is that people wish to make baby gowns (or tiny, tiny cute cloth diapers) to donate to the hospital so they struggle with good patterns that work for these babies. There are groups who will share their patterns, so you don't need to start from scratch. Threads of Love and Angel Layettes are two of many groups that sew blankets and gowns for all size babies, including those who are born too early as miscarriages. Google is your best friend here, you will find many individuals and groups.
What about research you ask? What is being done about looking into causes and prevention?
There are only a few groups doing this at the moment. In the US the a few prominent groups you can support (and they NEED your support in raising awareness about them and helping to raise funds). They are Star Legacy Foundation (Stillbirth research and education is their focus) and First Candle (SIDS, SUID, and Stillbirth). The Pregnancy Institute is another created by Dr. Jason Collins has been working on cord issues (and now a few more related topics about how the baby becomes vulnerable in the womb). Both are national organizations that seek the support of families to help raise money and awareness. But they also advocate at national levels for more research dollars and making miscarriage, stillbirth, and early infant deaths a priority. Recently, a new Coalition began which has the vision to Unify and Amplify voices for Stillbirth (and other infant losses). Visit ASAP (Action in Stillbirth Awareness and Prevention) (www.StopStillbirthASAP.org) and become a member - either as an individual or a group/organization/website. I am a part of this Coalition and do encourage you to join. You can be kept updated on important initiatives and projects, share your organization's news (fundraisers excluded), and more.
Worldwide there are others: ISPID (International Society for the Study of Perinatal and Infant Death) and ISA (International Stillbirth Alliance). They work to keep track of research and connect researchers together at bi-annual conferences. Individual researchers might also have clinics and research centers such as Dr. Alex Heazell and Dr. Jason Gardosi from the UK.
When raising funds you may wish to ask how the money will be used (for SIDS or Stillbirth or Neonatal Death or for direct research or for conferences and summits that bring researchers together. All are necessary to see progress
There is still so much to be done and there are so many organizations fighting for the same dollars and recreating the same type of service, collaboration could be so productive and a wise use of energy.
However, after doing much research, web surfing, and checking in with those working in the field, if you feel there is a gap and you have an idea on how to help, then go for it...fill it.
Thank you for wanting to honor your baby and to make a difference for others. We need you in the cause!