In January 2012, my husband and I learned that we were pregnant with our first child. We were beyond excited. Not only was this our first child, but this would be the first grandchild for three sets of grandparents. We began making plans right from the start and could not wait to welcome this new life in the world.
In March 2012, we had an early ultrasound (I was 11-weeks, 2-days), and we were shocked to learn our baby had a neural tube defect called anencephaly. Anencephaly is sadly a terminal condition and there is nothing doctors can do to fix or reverse the condition. My husband and I had never even heard of anencephaly! As you can imagine, we were in utter disbelief, and our world felt like it was turned upside down. Despite this devastating diagnosis, we made the choice to carry to term, embrace our child's life, shower our baby with love, and make as many memories as possible. We decided to create a "baby bucket list" of all the things we would have wanted to do with our child if he had been healthy and lived a typical life. We took our baby to all our favorite places, spent the day at the zoo, went camping, kayaking, and to various parks. We had special events with our family, gave the baby special food, read to the baby, and did our best to give our baby as many experiences as possible. At 15 weeks, we learned we were having a baby boy. We decided to name our baby Amalya Nathaniel. In Hebrew, Amalya means "Work of the Lord" and Nathaniel means "Given by God." From the very beginning, we felt like the Lord had a specific purpose for our baby. We did not yet know what that purpose was, or why it needed to involve our child passing away shortly after being born, but we knew the Lord did not make a mistake when he created our child with this condition. For us, our precious little baby was truly a "Work of the Lord, Given by God" and we always wanted that to be at the forefront of our minds.
As we bonded with our baby and made memories with him in utero, my husband and I started talking about end of life matters. We decided that not only did we want to make the most of our son's life, but we also wanted to make the most of his death. We truly wanted to allow our son to make as much of an impact on this world as possible. To do this, we decided to pursue organ donation as well as whole body donation. We felt this would bring an extra layer of meaning to his short life. We started exploring various options a short time after receiving his diagnosis. Unfortunately, things did not go smoothly as we pursued donation options. The places we contacted in regards to whole body donation said they did not work with infants. The places we contacted in regards to organ donation said that unfortunately, due to his condition, he did not qualify for donation. Although we were saddened to hear these things, we decided not to give up, and chose to continue to pursue donation throughout the pregnancy and prayed that the Lord would open a door for us to donate.
As my September due date drew near, we created a very specific birth plan and met with our doctors and hospital to communicate all our wants and needs. We were very blessed that both our hospital and doctors were willing to be supportive and accommodating. After speaking with them and doing a ton of research, we decided to deliver via C-section at 37 weeks. We felt that this would give our son the best chance at being born alive, which was very important to us. This would also allow our very large family to all be present at the hospital for his birth and spend time with him after he was born.
The weeks leading up to our son's birth were filled with a mix of emotions. We were heartbroken to know that we were not going to be keeping our boy, but we were so very eager and excited to meet our son. During our pregnancy, the Lord used our son to touch the hearts and lives of many people and allowed my husband and myself to minister in ways we would have never expected. We were so thankful for this little life the Lord had gifted us with. Yet, we still wanted to do more and found ourselves extremely saddened that we would not be able to participate in some form of organ donation. Then on Friday, September 7, 2012 (three short days before my September 10 delivery), I made one last phone call to ask about donation options and that day a miracle happened… We learned we would be able to donate our son's liver, pancreas, and whole body, all for scientific research. Each gift would go to a different research group who would use his donations to study cures for childhood illnesses and develop life saving techniques for the pediatric population. We could not be more excited. We went into our last weekend so full of joy. We knew we did everything to make the most of our son's life, and now his death would have a deeper meaning.
On Monday, September 10, 2012, we finally got to meet our sweet Amalya Nathaniel face to face. It was an amazing, incredible, indescribable event. My husband was in the operating room with me the entire time, and as soon as the doctors took Amalya from my stomach, they laid him on my chest. It was true love at first sight. I looked at my husband and said, "He's so precious…I wasn't expecting him to be this precious." We were so blessed that our little guy was born alive and even had his eyes open. My husband and I spent the remainder of my operation with our son on my chest. We had the chance to tell our boy how much we loved him and how special he was. Eric was able to clean him a little and get him weighed. He was 4 lbs 9 oz!!! We both were able to have skin-to-skin time before we left the operating room. Once the doctors were finished, I was brought back to my hospital room where our entire family waited to meet Amalya. Each of the grandparents took turns holding him. All six grandparents and three great-grandparents were able to hold him while he was still alive. The aunts and uncles were also able to meet him while he was alive. It was so amazing to see our family welcome him with open arms and love him for who he was.
Just over an hour after Amalya was born I looked up and I realized he was getting ready to leave us. Eric had been holding him, but handed him back to me. The nurse checked his heartbeat; it was only at 5 bpm. My dad, who is a pastor, laid his hand on our son as I held him close. He then prayed over our boy as he took hold of the Lord's hand and entered into his eternal rest. Tears streamed down my face as I kissed my sweet baby's cheek. In that moment, I could feel my heart break. Amalya Nathaniel was with us here on earth for 37 weeks in utero and 1 hour and 20 minutes in our arms. Although he never moved or cried, I know he felt our love and his entire life was spent in the arms of those who cared for him deeply.
Once he had passed, we spent some time taking pictures and making sure each family member had the chance to hold him. Then it was time for him to go for his organ procurement surgery. Eric walked him down the hall to an operating room where a special team of recovery surgeons was waiting. About two hours later they brought Amalya back to us. We were told the recovery went extremely well and that the organs were in great condition for the researchers. We were thrilled.
We spent the rest of the day celebrating our little guy. We took tons of pictures, made prints of his hands and feet, and gave him lots of hugs and kisses. We even had a birthday party complete with cupcakes, a "birthday boy" hat, a "0" candle, and a tear filled round of happy birthday. Twenty-seven people were able to join us for his party in our hospital room. Friends and family stayed with us all day. It was an incredible experience. Although there were tears and sadness, joy overflowed from our room that day. I can't even describe in words what it was like.
At the end of the evening, it was finally time to say goodbye to our precious boy. Because we chose to participate in whole body donation, he needed to be cooled within twelve hours of passing. Each family member said a final goodbye, and then Eric and I spent some time alone with him. We held him tight, prayed over him and wept. Finally, we called for the nurse and handed our sweet boy over for the last time. The moment I let him go, my heart shattered. It was the hardest thing I've ever had to do. I was so in love with this sweet gift from the Lord, but I knew it was time for him to fulfill the rest of his purpose here on this earth.
In the weeks and months that followed, Eric and I were blessed to be supported by our family. We found great comfort in the knowledge that the Lord had a unique purpose for our son and we began to heal from our loss. In those months, we were blessed to hear from each of the researchers who had received our son's gifts. We were blown away to learn how his organs were used and that his gifts would help save and better the quality of life for thousands of other babies in the future. Amalya Nathaniel was at his "internship" (whole body donation) for eight months before we received his ashes back. One of the many things he accomplished on his "internship" was helping the researchers get a new procedure for pediatric emergency medicine passed through the FDA! We could not be more proud of our son.
About nine months after his passing, I decided to create a website about neonatal organ donation to help other families who might be interested in pursuing donation after a terminal diagnosis. In June 2013, Purposeful Gift (www.purposefulgift.com) was born. I created the site in honor of my boy and his donation, as well as all the babies who will be able to donate in the future. During 2013 and 2014 my husband and I also had the amazing opportunity to speak on the national level several times about our son, our journey with anencephaly, and our experience with donation. In December of 2014 we decided to take Purposeful Gift to the next level and applied for our 501c3 non-profit status. We were blessed to receive the non-profit status, beginning yet another chapter of our son's legacy. Donation has brought Eric and me a very unique layer of healing, pride, and joy. We are so very proud of our son and are excited that his life and death had such an impact on our world.
Our journey with anencephaly was heartbreaking, but it was also a journey filled with joy. The Lord used our son in so many ways and we feel so blessed that the He allowed us to be Amalya Nathaniel's parents. We do not regret our journey for one moment, even with the pain, it was worth it! We will forever be blessed by our son, and will hold the memory of our son close to our heart as we do our best to keep his legacy alive.
If you would like to know more about our story and what the Lord continues to do with our son, or if you would like to learn a little more about neonatal organ donation, please visit www.purposefulgift.com You can also view a 10minute documentary about our story by visiting http://agency.thehumanstory.com/projects/amalya/
to Anencephaly Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.