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The bliss expectant parents feel is tremendous, but for some, there are unfortunate times when routine appointments take unexpected turns, and life is flipped upside down. Hopefully, you have never received news that your baby will live just minutes, hours or days, in which that life as you knew it, will now be permanently changed. Hopefully, you have never struggled to find good amidst the tragedy of devastating loss.
A neural tube defect called anencephaly is 100% fatal. Typically, babies with this condition pass away either in utero or shortly after birth. Parents are often left wondering if they will be able to accept the loss, if there can be a more meaningful purpose to a short life, and even if they can find the strength to stay away from the deep, dark place growing within their hearts.
Bethany Conkel received the news of an anencephalic diagnosis for her unborn baby, Amalya Nathaniel, at eleven weeks and two days into her pregnancy. Sarah was told about her unborn twin son Thomas at twelve weeks. Abbie learned the diagnosis for her daughter Annie at nineteen weeks. Each of these brave women, along with their husbands, knew they were going to "embrace their baby, make the most out of their pregnancy, and celebrate their child's life, no matter how brief it might be."These are only a few of many couples choosing neonatal donation as a way their babies lives will make an impact on others. The path isn't without heartbreak and difficulty, not only for bearing such grief, but also in finding facilities capable of accepting their donation. It took until just two days before Amalya Nathaniel was born to find a program that would agree to accept him. "Many parents are just told there's simply no way to donate," Bethany explained. "Most families are told it is unethical or illegal." Its neither, experts told NBC News.[ii]
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Neonatal donation creates a way for parents to establish a legacy for an infant whose life on this earth will be brief. By requesting organ and tissue donation after death, parents are deciding to enhance or even save the lives of others through research.
"It was true love at first sight," Bethany says on the day of Amalya Nathaniel's birth. Eric and I spent a little time showering love on our sweet baby and savoring the last few moments together as a family. We learned we would be able to donate our son's liver, pancreas, and whole body, all for research. His tissues have been used in life-saving therapies for babies with Type 1 Diabetes, and to improve emergency medical treatments. Each gift went to a different research group who used his donation to study cures for childhood illnesses and develop life saving techniques for the pediatric population. We could not have been more excited."[iii]
The Conkel's gift made his little way right here to Bulverde Spring Branch as the Centre for Emergency Health Sciences (the Centre) received Amalya's body. Most importantly, countless emergency medicine providers from as far away as Europe, the Middle East, across the Pacific Rim, and throughout the entire United States, have viewed Amayla's images and saved lives because of what he helped to accomplish. Scotty Bolleter, Chair of the Centre, states, "Medicine has to evolve and these gifts make life-saving change possible." Donating a body for research gets less attention than organ donation often because there are no headline-making "saves." However, critical medical research in labs around the country depends on scientists' ability to work with human tissue. Amalya's gift to the Centre was the most important facet of information that helped clear a path through the FDA for pediatric vascular access when little heartbeats are on the line between life and death.
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Recently, the Centre completed a research project on pediatric extremity hemorrhage control and tourniquet. Mass casualty events, inclusive of school shootings, continue to dominate headlines and the Centre's work shows the extreme importance and value of an immediate, well-prepared mass casualty response on behalf of first responders, law enforcement and emergency services personnel. This type of lifesaving medical research is only possible because of neonatal donations.
The Centre is sharing these moments to offer a small window into a community that illuminates and inspires while saving lives far beyond imaginary lines.
Louisiana Organ Procurement Agency. Neonatal Donation-Amalya's Story, 2018, www.lopa.org/neonatal-donation. Accessed 21 December 2018.
[ii]NBC News.The Littlest Donors: Neonatal Organ Donation Offers Hope in Tragedy, 18 March 2014, www.nbcnews.com/health/kids-health/littlest-donors-neonatal-organ-donation-offers-hope-tragedy-n51436. Accessed 21 December 2018.
[iii]Conkel, Bethany. Purposeful Gift.Our Journey, 2013-2015, www.purposefulift.com/en/donation-story/our-journey/. Accessed 21 December 2018.
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