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-In November of 2017, Three Little Birds shared the story of a Pennsylvania family whose daughter, Miriam, nicknamed Mira, was diagnosed with serve hydrocephalus with minimal brain development. They sought expert help from the Children's Hospital of Philadelphia (CHOP) for more testing and baby Mira was diagnosed with several birth defects: severe hydrocephalus (fluid on the brain), a ventricle septal defect (hole in her heart), spinal cord defects, umbilical hernia (bowel in her umbilical cord), and persistently collapsed bladder with cystic renal dysplasia (non-functioning bladder and kidneys). All this meant that, though Mira was safe a pain-free in her mother’s womb, she could not survive after birth. Mira’s parents, Ali and Joe reached out to Three Little Birds for support in how to navigate the months ahead as they prepared for Mira’s arrival. Read more details about their story here.
Ali and Joe highly prioritized bonding with Mira throughout Ali’s pregnancy. Ali says:
“Mira was a beautiful life from the day of her conception. When we first received her diagnosis, we had an unpleasant (to say the least) experience with the maternal fetal specialist we saw locally. He would not say “baby.” He only would refer to Mira as “the fetus” or “the pregnancy.” He only saw her diagnosis. He did not see HER. He did not see our love for her. From that moment on, I pushed hard for everyone in our lives to see Mira for everything she was, not just her diagnosis. She was (and I’m sure still is in Heaven) spunky, stubborn, sweet, and loving. We saw these qualities in her throughout the 20+ ultrasounds I had while pregnant. We learned about her personality as we talked to her and I felt how she reacted to different things. There is absolutely nothing ‘easy’ about learning to cope with your child’s death, but I can’t even begin to imagine how much harder this healing process would be if we hadn’t ensured we got to know Mira and bonded with her through my pregnancy. Every day we think of the time we did have with her and it does bring comfort. I made a scrapbook of all the things we did with Mira while I was pregnant. I look at it often, and share it with others, and we find comfort in the love that was a part of her life (http://babyferraram.blogspot.com/p/miras-scrapbook.html).”
SBD Doula and NILMDTS Photographer, Desiree Miller, connected with Ali and Joe, listened to them talk lovingly about their sweet baby girl, the ways they parent her by reading to her, singing to her and celebrating each day they got to carry her. Despite living a distance away, Ali and Joe received a Palliative Care Maternity Session for Mira’s parents to cherish forever.
One of the best photos from the shoot included a banner with Mira’s name on it, lovingly crafted by her mama. Ali shared:
“I made two banners and a card with a bible verse on it for our maternity shoot. The banners were so important, because there is just something so special about seeing and hearing your child’s name. That is one of the first important decisions you make as parents, what will my child’s name be? A name can mean so much. We so carefully selected Mira’s name that I wanted to it be displayed proudly. It was another way to say to the world, “This is my daughter, Miriam, not ‘a fetus incompatible with life.’” The banner with Mira’s full first name, Miriam, is now laid out across the display cabinet where we have a memorial area set up for her. Her name is proudly displayed, as we will not have her name whispered and avoided because she was lost, we will have it shouted out and celebrated with joy because she was loved!
I spent so much time at my crafting area through my pregnancy, and spend even more time there now. I had planned to make so many things for her nursery and hoped to someday do crafts with my child. This dream did not become reality, so instead I made (and make) things to celebrate the life she did have. The time I spent making the banners, her scrapbook, and other decorative items for our home was a labor of love for her. I did, and still do, talk to her and spend time with her while I sit working on projects.”
Mira was born on December 18th, 2017 weighing 4 lb 11 oz and was 16 inches long. She had brown eyes and dark brown curly hair. She lived for 53 minutes and was in her parents arms for the entire time. Ali talks about that sacred time here:
“The time we had with Mira while she was alive, and the time we spent with her after she passed was amazingly peaceful. Most people are shocked to hear that, but it truly was. We wanted Mira to experience nothing but love, and we met that goal. It is so hard now, missing her every second of the day. It is easy to lose sight of the peace and that love when you feel lost in the darkness. The pictures Desiree took for our maternity shoot and from Mira’s birthday are the number one things that can pull me out of the darkness when it is at its worst. I can’t even put into words how valuable those pictures are. Most parents get a lifetime to take pictures of their child. One photo didn’t turn out well? Oh, well the next one will. Loss families do not have that option. The pictures you have are all you will ever have. There can never be enough. I look at Mira’s pictures constantly. I look at our maternity pictures and feel the joy of celebrating her that day with Desiree. I look at the pictures of my parents seeing Mira for the first time and marvel at their faces full of awe. I look at the pictures of her sweetly snugged in my belly cast (also made with Desiree!) and remember the beautiful peace of that day. Those pictures are the most important thing in the world. I wish every family that has to make the heart reaching choice of palliative care for their baby could have the experience I did with Desiree. I have been able to use the pictures to make additional projects celebrating Mira and we have filled our home with the prints. We want her presence in every room of the house, just as a living child’s would be."
In an effort to give back and create a beautiful legacy project in Mira’s memory, Ali and Joe will be making and donating “Mira’s Banners of Love” to families served by Three Little Birds, who receive a life-limiting or uncertain fetal diagnosis, in an effort to help them bond with their baby, as they did with Mira. Families will receive a personalized banner to be incorporated into their Palliative Care Maternity Shoot and other ways they bond with their baby as they carry them to term. This is one example of how families can turn hurt into healing by giving back to other suffering similar situations as well as helping their child’s special spirit live on!
Thank you Joe and Ali for sharing the spirit of your beautiful daughter and for joining our nest to make it stronger!
Three Little Birds Co-Founder, Doula and NILMDTS Photographer, Desiree Miller, met Linda and Steven Kong when they lost their son, Emmett, in March 2017 after complications lead to him being delivered prematurely at 21 weeks. The Kong's were devastated and wanted to spend as much time with him as family as they could.
Desiree was able to capture photographs of the Kong's as they embraced and bonded with their son. Unfortunately, this was not the Kong's first experience with losing a pregnancy. They also lost their older son, Greyson, prematurely in October 2015. Emmett and Greyson's parents are so grateful for the photographs they have to memorialize their sons as they heal from their losses.
However, like most other loss parents, the need to do something...anything....to memorialize their children and help other families facing the same journey, fueled them to give back to their community and Three Little Birds Perinatal.
"I never in my life thought I'd go through that. But you never know until you're put in that situation", says Linda. "The need to give back through this type of work is just as inherent as my motherhood. I love finding ways to memorialize them both and validate other families dealing from these tragedies."
In their healing journey, the Kongs have participated in fundraising events for the March of Dimes in their annual March for Babies walk to honor families in their community who have walked the same journey and seek to validate and memorialize their children.
Three Little Birds Perinatal kept in contact with Linda in the months after meeting Emmett and talked about a lot of the problems and difficulties families face in losing a pregnancy. These discussions lead to the development of several items to be sold in our Etsy store for families to purchase to validate their children and provide comfort post-partum as mom heals.
Linda developed the Stillborn Announcement Cards for families to share with others. Despite a baby passing away, families can still bond with them and certainly feel the same pride and love shared by parents who birth healthy babies. These cards help others understand it is ok to acknowledge their child where many may feel it is taboo or uncomfortable. She also developed our Recognition of Life Certificates for our Perinatal Comfort Care Boxes and for digital download via purchase in our Etsy Store. Linda knows firsthand the importance of validation.
This effort is a perfect example of a "Legacy Project". Three Little Birds Perinatal encourages our families to develop a project, resource or bereavement support item to help other families, but more importantly to create a legacy in their baby's name.
Her most recent contribution to our Etsy Store are hand sewn Miscarriage Comfort Packs filled with rice and herbs to help alleviate cramping and discomfort after loss. They will be available in our Etsy store for purchase this Spring! We are so grateful for all of the support Linda has provided to Three Little Birds and her involvement in developing items to provide comfort to families when faced with similar experiences.
It is worth noting, Linda supports Three Little Birds from her home in Lancaster County, PA, more than 80 miles away! We are so grateful for all of her volunteer efforts to help other families near and far, as well as remember her sweet sons, Greyson and Emmett!
Click here for more information on how to create a legacy project in memory of your baby!
If you are looking for more rewarding opportunities to volunteer, Three Little Birds Perinatal invites you to join us for our first Quarterly Birdhouse Volunteer Meeting on January 17!
We coordinate our volunteer support through a private Facebook Group called the "Birdhouse". Here, volunteers brainstorm, provide feedback, leads on Community Sponsors, as well as provide each other with support as we work together to further the mission, services and programs Three Little Birds Perinatal offers the community at no charge.
Many of our Birdhouse members are loss families, family members or friends of someone close to them who suffered a loss, and many are simply kindhearted individuals who support us seeing the value of our services.
In 2018, Three Little Birds has developed an aggressive Strategic Plan for the development of new services and programs through fundraisers, focus groups and the development of bereavement comfort items to be sold via our Etsy page.
Therefore, we need everyone's help!
We need big-hearted individuals with big ideas to join our nest! Let us know if you can attend our meeting and bring all of your ideas! We can't wait to meet you!
Kristen Samuelson, SBD, Founder & Director