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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!
Kristen Samuelson, SBD, Founder & Director