This afternoon I was thrilled to receive a message from one of my dear anencephaly mom friends. She had her son back in 2010. After her son passed he was able to participate in donation for research. Since then she has been able to learn how several of her son’s gifts were used; specifically, she was able to learn how her sons eyes were used. She was even able to meet the researchers who received his eyes and worked with them.
Yesterday she learned that a study was published on 3/2/12 which contained direct information used from her son’s gift. Some of the photos published in the study were most likely photos of cells taken from his eyes. My heart is filled with JOY for my friend. Although her son passed away several years ago and did not have the life that parents dream of for their children, he has had a HUGE impact on the world. People are being touched in a very real way due to his gifts.
Stories like this are the reason I promote donation with such passion. What an amazing “Proud Momma” moment this must have been for her! Again, my heart is filled with joy because of her son’s gifts and the legacy that he has due to donation.
October is a special month. Many people connect October to the beautiful colors, wonderful fall food, decorative mums and pumpkins, and Halloween as reasons for it being special. But, for many others it is special because it is Miscarriage, Stillbirth, and Infant Loss Awareness Month. Like most people, I didn’t realize this even existed, nor did I understand its significance. Sadly, in our society, miscarriage, stillbirth, and infant loss are not topics which are readily accepted in day to day conversation. Yet, in the United States alone, 15-20% of all verified pregnancies end in miscarriage each year, nearly 30,000 pregnancies will end in stillbirth, and about 90,000 children will die before their first birthday (statistics source). This is just for the United States alone!!! With numbers of loss being as high as they are, and the number of families affected by loss, I find it extremely sad that discussion about loss makes people so uncomfortable. October is special, because it allows families who have lost children to have a small platform to speak openly about the child they have lost. The child they wanted. The child they love. The child they miss. The child they wish they could speak openly about during the other 11 months of the year. (Now, if you know me personally, you know I am very bold in speaking about my son, the details of his condition, my thoughts surrounding his loss, his amazing story of donation, my memories of him, and how I am feeling in the moment. You know I will do this not only with those of you who are my friends, but also my co workers, acquaintances, complete strangers, and basically anyone who has ears… And yes, I realize this is not normal; yes, I realize it makes some of you uncomfortable, and yes, I realize this is typically considered a social taboo… and no, I’m not going to stop). I hope that one day that families will be able to speak openly about the ones they have lost year round, and that society will embrace those walking through this journey rather than shun them. I am thankful for October because October brings healing for families and lets them share with pride about their special little one. Special love to all the mothers in the miscarriage, stillbirth, and infant loss community.
I also find October allows me to shine a light on the importance of donation. Donation is all about saving lives. Neonatal donation is about saving lives of babies and helping the horrible statistics of infant loss go down. Regardless if donation occurs for transplant or research, donation is an amazing gift with the same goal of preventing heartbreak for another family. Although heartbreak is inevitable for the family who will be donating, it can bring amazing joy and healing to them as well knowing that the gift of donation will prevent this pain for another family.
I am happy to say that during October I was able share the stories of 4 little ones whose families created a lasting legacy through the purposeful gift of donation. I am so honored to share these stories during such a special month. May we remember these little ones and be thankful that their families who made the choice to bring down the statistics of infant loss. (Anna Vittoria’s Story, Amelia’s Story, Annie’s Story, Palmer’s Story)
As we enter November and the holiday season begins, I challenge you to be gentle with the members of the miscarriage, stillbirth, and infant loss community. Let these families share about their little ones who have passed and speak openly about them. Let the specialness of October to overflow into the rest of the year.
Today we celebrate my son, Amalya Nathaniel on his first Birthday and first Heaven Day.
Today holds so many emotions and memories. It’s hard to believe that a year has gone by since we said hello and goodbye to our sweet little man. I can still remember when the doctor placed him in my arms, I looked at Eric and said, “Oh my goodness, he’s so precious! I wasn’t expecting him to be this precious.”
Photography by EJ Fleck, Bella Baby Photographer
I think I feel the same about our entire journey – I wasn’t expecting it to be this precious. Yes, it has been gut-wrenchingly hard and painful at times, but it has also been beautiful, amazing, and a true blessing. As I stop and reflect on all the incredible things the Lord has chosen to do with our son, the legacy He has allowed our son to have, and the people that have been touched because of our son’s life, I am truly humbled. Yes, this journey has been much more precious than I was expecting. We are so thankful for our little “Work of the Lord, Given by God”. Obviously we wish we could be celebrating differently today, but we know the Lord’s plans are perfect in every way. September 10 will always hold a special place in our hearts.
Amalya Nathaniel, my precious little boy – I love you, miss you, and I’m so very proud of you. I can’t wait to be reunited with you in perfect glory. You have been a blessing to many. Your Daddy and I are so very thankful the Lord entrusted you to us as our son. You will always have a special place in our hearts. Happy Birthday, Sweetheart! Love, Mommy
Special thanks to our photographer friend, Norma Cavallaro for the beautiful family pictures!
I have had a very proud and excited momma heart all weekend for several reasons. I’m happy to have a place to share them. The biggest reason is that milestones are being made in the world of neonatal organ donation.
IIAM (International Institute for the Advancement of Medicine), the organization who placed Amalya’s organs and whole body with various researchers around the country, has just announced their new Neonatal Donation Program. This program has been created to serve families who have received a terminal diagnosis during pregnancy, have chosen to carry to term, and have decided to participate in donation for research. Until now, the likelihood of a family actually being able to donate for research (or transplant) was very slim. Not many organizations are willing to work with neonates, and even fewer are willing to place organs for research. After helping our family, and working with Amalya, IIAM has decided to extend themselves by offering a hand of support to other families in situations similar to ours. They have created this new program in order to partner with families, and help them create a lasting legacy for their child through the gift of donation.
Eric and I were very blessed to be a part (albeit, a small part) in helping this new program take form and become a reality. We are SO thankful for everyone at IIAM who has dedicated time and effort in making this happen. Many families will be blessed because of this program. You can learn more about the program by visiting their website at http://www.iiam.org/NeonatalDonorFamilies.php. (And yes, the silhouette at the top of their page is a picture of Eric and I!!!! Totally geeked!)
IIAM also had an amazing opportunity to display and present a poster presentation this past week at a conference for transplant coordinators highlighting the new program, sharing most of our story, and explaining how the program has evolved since. You can view the poster presentation by clicking here.
Eric and I are simply in awe of what the Lord has done in the past eleven months. We have been blown away by the number of lives our sweet Amalya has touched. We shed tears of joy when we learned how researchers were able to use his tiny organs to make medical discoveries and advance medical procedures which will save hundreds of lives. We have been elated to share Amalya’s story publicly, encouraging medical staff, and members of the organ recovery world to help more neonate families. We are now in utter shock and joy to see this new program take form. We know first hand what a blessing it is to participate in donation and how it brings a unique healing. We pray that many more families will be able to feel that blessing and healing.
As a mom, one of the hardest parts of having my child die shortly after birth was knowing that I wouldn’t be able to watch him grow, that I wouldn’t be able to celebrate him reaching milestones, that I wouldn’t be able to see him achieve special things in this world, and that I wouldn’t be able to see his dreams come true. Although I haven’t been able to do those things in the typical way, I am proud to say that I have been able to celebrate milestones, see him achieve special things, and watch how he has help OTHERS dreams come true. I am so very blessed and proud to be called Amalya’s momma.
Thank you Lord for blessing me with a special boy. He truly has been a “Work of the Lord, Given by God”
It’s been a while since I’ve done a blog post. It has been a busy summer, and the past several weeks have been dedicated to prep work for my “real job” as a special education teacher. The beginning of school is always hectic, and this year more so as my school moved to a brand new building!!
Anyhow, I’m very excited to share Thomas’s story with everyone. I met Thomas’s mom, Sarah, through one of my anencephaly groups. I was excited when Sarah shared with me that her son was also able to participate in donation for research! At the time, she was the ONLY other parent I had heard of who had a baby donate for research. I enjoy speaking with Sarah and love hearing her desire to promote and bring awareness to donation. She is a huge encouragement to me.
Sarah graciously has shared Thomas’s story on Purposeful Gift. We hope having multiple stories of donation will encourage families and show the amazing impact and power that donation can have.
It has been an AMAZING launch week for Purposeful Gift. It has been awesome receiving feedback, encouragement, and having discussions with people about the site, as well as neonatal organ donation in general. We are thankful for all the people who have shared the link to our site and helped spread awareness about the options surrounding neonatal donation. Education and awareness is key. You never know when you will cross paths with someone who is facing neonatal loss. We hope that families who have received a terminal diagnosis will find encouragement and helpful information because of our website.
Not only did we launch our site this week, but I also wrote an update letter for family and friends with an overview of the amazing ways the Lord has worked in Eric and I over the past 10 months, how we have been able to share about Amalya Nathaniel, as well as some of the responses we have received about Amalya’s donations. I thought I would share the update letter here as well:
July 15, 2013
Dear Friends –
It is hard to believe that it has been just over 10 months since we said hello and goodbye to our precious work of the Lord, Amalya Nathaniel. In the past 10 months we have seen some amazing things happen. We thought it was time to write an update letter so we could share some of the exciting ways the Lord has continued to use us and our son.
First, as some of you know, Amalya Nathaniel’s ashes came home at the end of May. He spent a little over 8 months at his “internship” (whole body donation) before he came home. We were thrilled with how long he was able to participate in his internship and serve the medical community. We were blessed to receive a letter from the actual research group that used Amalya explaining all the things they were able to do with him and exactly how he was able to help. In the letter we were told that because of the things they learned while using him, 100’s of pediatric lives will be saved in the future. As his parents we couldn’t be more proud.
We have also been blessed to receive information from the two researchers who received Amalya’s liver and pancreas. It has been so amazing to hear the specifics of how our son’s gifts were used. Typically, when a person donates to research they never receive follow up information or hear how their gift was used. Because of this, receiving feedback was unexpected, but SUCH a blessing. We are truly thankful the Lord allowed us to learn more about our son’s legacy.
Another amazing thing the Lord has done in the past 10 months has been allowing us to publically speak and share our story. In April we spoke in Dayton to about 100 nurses, sharing our story and the specifics about our journey with donation. Also in April we spoke in Newark, NJ to about 120 people from the organization that helped make our donations possible. In May we were able to speak near Scranton, PA to about 90 people from the parent company of the organization that helped make our donations possible. And finally, just last week we spoke in Las Vegas, NV, to about 30 people form 5 different organ procurement organizations representing multiple states. Speaking has given us the opportunity not only to share about our son, explain the blessing of donation and how it has brought us joy, healing, and peace, but also has given us the opportunity to share our faith, love for the Lord, and how our journey became a blessing, not a tragedy. We never expected to be given these opportunities, but are so happy to have been used in this way.
Finally, over the past month or so I (Bethany) have sent a good amount of time creating a webpage about Neonatal Organ Donation. The page is called Purposeful Gift (www.purposefulgift.com) . During our journey we quickly learned that there is not much information available to families about neonatal donation options, and many doctors and members of the medical community do not have/provide accurate information. Due to these and other factors, neonatal donation is currently rare. The goal behind the webpage is to provide accurate information about donation and support families who have received a terminal diagnosis and would like to donate. We would also like doctors to be able to use this as a tool when speaking with families. We hope that this page will be a blessing to others, and hope that other families will be able to experience the joys of donation.
We never imagined the Lord would use us and our son in these ways. We are so blessed. We are thankful to be Amalya’s parents and look forward to seeing how this journey will continue to unfold.
Thank you all for supporting us, even 10 months down the road.
With excitement and joy,
Eric and Bethany
On July 8, 2013 Eric and I had an amazing opportunity to speak at an IIAM (International 
Institute For the Advancement of Medicine) training conference in Las Vegas, NV. This was a small conference focused on training medical staff from OPOs (organ procurement organizations) around the country. Five OPOs were represented as well as individuals from two research organizations, totaling about 35 people. We were able to share our story, as well as introduce the new webpage for the first time. We also focused on the need for OPOs to walk along side families who have received a terminal diagnosis, the opportunities that exist for neonatal donation (including donation for research), and the blessing/healing that donation of any type can bring to a family. We were blessed with lots of positive feedback, as well as new insight into the barriers to donation. The really special part of the conference was the opportunity to have dinner with about half of the people who attended our presentation. We were able to have some deep conversations and open up about the details from our story. We enjoyed learning more about the donation process from the perspective of the individuals who actually perform the recovery surgeries. What a great experience to glean information about the donation world.
We were also blessed to meet with a representative from the organization who received Amalya’s pancreas. It was so interesting speaking with her, learning more about the organization and the scientific research being done with pancreas. The advancements being made to find a cure for type 1 diabetes are amazing. She also sent us a follow up e-mail with specific examples surrounding neonatal pancreas research. It was wonderful to learn more about the ways Amalya was able to help the medical community.
Overall, the trip was amazing. We love sharing our story, and love connecting with people who make the purposeful gift of donation possible. We feel blessed in so many ways and hope that our story will stick with the OPOs and maybe make the donation process easier for other families.
Welcome to Purposeful Gift. This website has been a labor of love with the goal of helping other families be able to participate in donation. Our experience with donation brought us so much joy, peace, and healing after saying goodbye to our son. I would love nothing more than for other families to be able to expereince this same joy, peace, and healing. I am always sad when I speak with families who were given misinfomation about organ donation and, due to that misinfomation, were unable to donate. I hope that this page will be able to provide accurate information and help families make an informed decision about donation.
It is hard to believe that we are almost at the 10 month anniversary of saying hello and goodbye to our sweet little boy. I had no idea the road we would end up walking after his passing. If someone had told me that I would create a website less than a year after losing my son to help other families, I would not have believed them. I sit here today extermely blessed that the Lord has used us and our son in such amazing ways.
Thank you for visiting my page. I look forward to sharing more with you in the near future.
Bethany