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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!
PLEASE NOTE:/TRIGGER WARNING: This blog discusses Pregnancy After Loss/Rainbow Babies and the story of a local family. We understand if this subject matter may be a trigger for you. We encourage you not to read if you think this may trigger you in a negative way, however, our stories are intended to provide hope and inspiration to other families having suffered similar situations.
In late 2016, the Laughlin family was told their precious daughter had a condition known as Hydrops Fetalis. After several procedures to correct her condition in utero, Jodi and Alex delivered their perfect baby girl, who passed away shortly after birth. They named her Noelle Philomena. Noelle because it means Christmas and embodies the spirit of faith, hope and love; values that they continue to hold close to their hearts despite this devastating loss. Philomena was chosen to honor Jodi’s Mother. It wasn’t until later that they discovered St. Philomena is the patron Saint of infants.
Three Little Birds Co-Founder and NILMDTS Volunteer Photographer, Desiree Miller, met the Laughlin family after she received a request for photography services. Upon hearing her name, Desiree assumed she was named after the holiday season and she stopped to purchase a small pink stocking for Noelle and her family. She spent time photographing and making memories with the family, walking the journey with them as they said hello and goodbye to their first child.
Noelle's mom, Jodi, remarks “The time spent at the hospital almost felt like an out-of-body experience. Even though we spent several weeks fighting for Noelle’s life, nothing could have prepared us for losing her - and there is certainly no manual for how to proceed afterwards. I just knew that I didn’t want to leave my baby at the hospital. I knew I wanted to take her home with me in some way, even if that were through photographs. Desiree made us feel that it was OK for us to snuggle our girl. She made us feel that our daughter’s life was and is just as important as all the other babies that get to physically go home and that we should honor her. My husband was initially more closed off to the experience. Desiree encouraged him to hold her, to kiss her, to love her. Today, his eyes light up to see photos of his daughter in his hands. Those photographs are everything to us."
Jodi continues, "Desiree left us with information about Three Little Birds and I remember feeling so relieved that I had someone to reach out to when I got home. I didn’t get out of bed for days and it was Kristen (Executive Director) who was responding to my emails within minutes telling me that I was not alone, telling me is was OK to feel how I feel. My Mom and Sister were over all the time but there is nothing like having another loss Mom there to comfort you. Three Little Birds was there. And they continued to be there throughout the year."
Three Little Birds kept in contact with the Laughlin family over the past year and we were delighted to hear the Laughlin’s are expecting Noelle’s sibling in the spring of 2018! Part of Three Little Bird’s mission is to provide immediate and long-term support to families, especially as they await their “Rainbow Baby”.
A “Rainbow Baby” is a term used for a baby that is born following a miscarriage, stillbirth, neonatal death or infant loss. In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm. We understand not everyone likes or utilizes this term however there are many people who find comfort in this metaphor. We encourage families to find what works best for them and their unique family.
In an effort to help families bond with their rainbow babies, as well as memorialize and honor their previous loss, Three Little Birds offers the families we assisted through loss several support services, at no cost. The Laughlin family was excited to participate in a Rainbow Baby Maternity Shoot to honor both of their precious children.
“It is so comforting to know Three Little Birds is there for me now as we begin this new journey. They have been excited for us when we could hardly be excited, reminding us that this baby will never replace Noelle. It is because of their encouragement that I will have a quote above Rainbow Baby’s changing table that reads “Hand picked for earth by my Sister Noelle in Heaven“. It is because of them that I was able to finally start preparing for Noelle’s sibling with a happy heart.”, says Jodi.
Alex and Jodi welcomed us into their home this past Christmas, shortly after Noelle’s first birthday and showed us all the beautiful ways they honor and parent Noelle. The love for Noelle permeates throughout their home! They have a special area in their home that is filled with Noelle’s photographs, gifts bought for her from family and friends, as well as a very special tree, lit up and decorated in her honor.
On Noelle’s first birthday, the Laughlin’s asked their family and friends to do something for someone else in Noelle’s honor and in the spirit of the holiday season. Family and friends from all over posted photos of candles they lit in her honor, wearing Christmas sweaters or shared an act of kindness they did in her memory. It was inspiring and helpful for Alex and Jodi to see and feel all of this support during such a difficult time.
Alex and Jodi shared more wonderful news during their Rainbow Maternity Photo Shoot – they have formed their own non-profit organization to support families, appropriately called Noelle’s Light! The mission of Noelle’s Light is to provide financial assistance to families, like theirs, whose babies are given a life-threatening fetal diagnosis
Noelle's father, Alex remarks, “As Noelle’s parents, we do our best to carry her in our daily life through honest and often painful conversation, as well as recognize our obligation to embrace our experience with Noelle, act on it, and in turn, help others,” says Alex. “Throughout our experience with Noelle, we realized that, on top of receiving terrifying news of a fetal diagnosis, often times parents incur financial strain resulting from simply trying to make the best medical decisions for their unborn child. Medical expenses, travel expenses, lost wages – it can have a snowball effect that can make an already difficult situation completely unbearable.”
“Despite Noelle’s diagnosis, we still felt blessed. Blessed to have the support of family, friends, and our employers. Blessed to have nearby access to some of the best medical care in the world. We recognized that most parents do not have any of these circumstances working in their favor,” Alex continued. “This realization, along with Noelle’s spirit of light and love, is the inspiration for Noelle’s Light. We look forward to helping those parents keep the focus on their baby, not how they will pay for these circumstances."
Three Little Birds is excited to collaborate with Noelle’s Light to further support families like ours, as well as celebrate the arrival of Noelle’s sibling in a few short weeks!
For more information on Noelle’s Light, please contact Alex at 609-529-3490.
Link to Jodi’s Blog: www.noellessong.com
NILMDTS Volunteer Photography by Desiree Miller
Rainbow Maternity Photo Shoot by Desiree Miller, Image is Everything Studios
PLEASE NOTE: Three Little Birds can only provide our Rainbow Maternity Photo Sessions to families we have supported through loss. Because we are a volunteer organization, our resources are limited. Our resources are always FREE to anyone who is seeking support. For more information on our Pregnancy After Loss Support and Resources, click here.
BONUS PIC! Noelle's "big brother" Archie can't wait to meet his newest family member either!
Three Little Birds Perinatal & Palliative Care Advocacy & Support Center is a non-profit, fiscally sponsored by Federation of Neighborhood Centers (FNC) Philly. Our organization provides all of our social services at no cost to the family. We also do not directly solicit for support to the families we serve, however, we greatly appreciate the support of our families with whom choose to give back to us after we have walked their journey. Our volunteer-based non-profit depends on the support of the local community to continue to keep our services for free to everyone.
In an effort to give back to our families and encourage them to memorialize their baby,, we have established several Legacy Sponsorship options for families experiencing the loss of a pregnancy or infant to choose from to memorialize their baby with these donations. This includes one or a combination of the following:
$100 // TWEET MESSAGES TO OUR LITTLE BIRD
This sponsorship will provide you with your baby’s name and a sweet message to be posted on a dedicated space on our web page. This will always be available to view on threelittlebirdsperinatal.org
$200 // OUR LEGACY STORY
In addition to your baby’s name and a sweet message on our web page, Three Little Birds Perinatal will highlight your story in a blog post! This will then be shared (if you wish) on our social media pages and you will be free to share as well. This gives you an opportunity to memorialize your child and tell their unique and empowering story. Any photos provided to us will be included as well. Families will sign off on the final reviewed version prior to publishing.
$500 // OUR LEGACY VIDEO
In addition to your baby’s name and a sweet message on our web page, Three Little Birds Perinatal will highlight your story in a one to two minute video clip! We will contact you to set up filming and you can share your story and memorialize their life on video to be shared with family and friends, as well as our website.
OUR LEGACY PROJECT
Many families are finding healing in helping through creating on-going projects to benefit other families dealing with pregnancy or infant loss, or a specific diagnosis or circumstance they dealt with in their own experience that they would like to change. Examples of legacy projects include:
Families wishing to create a Legacy Project for their baby can host fundraisers with their family, friends or co-workers to raise funds to develop their projects so that the materials or expenses required to facilitate the project are covered. This is a great idea for families wishing to celebrate their baby’s first birthday with their loved ones. Contact us for more information or ideas on how you can start your own legacy project with Three Little Birds!
Kristen Samuelson, SBD, Founder & Director