Tuesday, April 7, 2015

Embracing His Impact

By Bethany Conkel

“I love my boy. I love my boy. I love my boy,” is all I could manage to force out as I gripped the arm of the chair trying to ignore the intense pain. I never thought I’d find myself in a tattoo parlor, let alone find myself sitting in the chair actually getting a tattoo!! 
After much debate, my momma’s heart was compelled to get a special tattoo for my boy. My reasoning was multi-faceted… Yes, I wanted to remember my son and memorialize him in a special way, but my reasoning went deeper than that. I wanted to celebrate his amazing accomplishments and have a constant reminder of the impact he has had on the world. 
Once my husband and I had wrapped our heads around the fact that our baby’s life would be brief, we decided we wanted to make the most of his life, as well as his death. To do this we created a bucket list to celebrate his life, and we decided to pursue organ, tissue, and whole body donation to allow his death to have an impact on others. This part of our journey was met with many obstacles and finding donation options was surprisingly difficult. In the end, we were blessed to have everything fall into place three short days before my scheduled C-section. We were ecstatic to learn that our son would be able to donate his liver, pancreas, blood and skin samples, and whole body, all to different researchers. Our son did not qualify to donate his organs for transplant due to his size and condition, but we were thrilled that he was able to donate to research and give back in that way.
After we said hello and goodbye to our son we became interested in learning what happened to his donations. Over time we received feedback about each of his gifts. We discovered his liver went to research surrounding cirrhosis and various liver diseases. His pancreas went to study type 1 diabetes, specifically hoping to treat children who suffer from this disease. One of his blood samples went to Duke University for the anencephaly research study, the other blood and skin sample went to create cell lines that will be used in future research studies (allowing him to help even years down the road). Each of these gifts went directly to save or improve the quality of life for others. 
His whole body went to train emergency medical professionals and to improve equipment used in pediatric emergency medicine. He was gone for eight months on what we like to call his “internship” before we received his ashes back. One of his biggest accomplishments during his internship was helping the researchers get a new placement site for a lifesaving procedure approved through the FDA. The researchers had tried to gain approval for this new location for seven years but had no success. After working with our son’s body, they resubmitted the proposed site and finally gained approval. In the letter from the FDA approval board, the researchers were told that the reason they were granted approval this time was due to the images of the neonate donor. This new site and improved equipment is currently being used around the world and the researchers have already received feedback about children’s lives being saved. 
As I sat in that tattoo parlor, gripping the arm of the chair, I couldn’t help but think about all my boy had accomplished in his short time here. I watched the artist carefully fill in the design which rests right above my knee cap, the exact location of the procedure my son helped get passed through the FDA. As pain rushed to the site, I thought about the small boys and girls around the world who would eventually be feeling pain rush to the same location, but for a much different reason. My pain was optional and cosmetic, their pain would be unavoidable and lifesaving. I thought about mommas who would be crying tears of joy that their baby was given a second chance at life. I cried tears of joy mixed with sorrow because my child helped make that possible. Although he was not given a second chance at life directly, he is given a second chance at life indirectly through the lives he helps to save. 
Each time I look down towards my knee I find myself saying “I love my boy. I love my boy. I love my boy.” 


April is National Donate Life Awareness Month. If you are interested in learning more about organ, eye, and tissue donation you can visit Donate Life America, or the Association of Organ Procurement Organizations. If you are interested in learning specifics about Neonatal Donation options you can visit Purposeful Gift.

Bethany Conkel lives in Ohio and is married to her wonderful husband, Eric. She is the mommy to two amazing children – one who is in heaven, the other here on earth. Bethany carried her precious son, Amalya Nathaniel (meaning: “work of the Lord”, “given by God”) to term after receiving the diagnosis of anencephaly when she was 11 weeks pregnant. Amalya lived for 1 hour and 20 minutes before taking hold of the Lord’s hand. After he passed, his liver, pancreas, and whole body were donated to scientific research. Bethany has since created a website about neonatal organ, tissue, and whole body donation called Purposeful Gift to help other families explore the option of donation. She is also a certified Birth and Bereavement Doula through Stillbirthday.com and serves with Sufficient Grace Ministries.


Kellie said...

So amazing Bethany! Not to mention all the people you have helped and educated about donation...even more lives saved! Your son has quite the legacy :)

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