Amalya's story, by his mama

Written by Bethany Conkel

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 anencephaly. My husband and I had never even heard of this condition. 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, 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 didn’t understand 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 extra 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 options 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 me 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 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 telling 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 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. 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. We were thrilled that he could be used for such an extended amount of time. 

About eight 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 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. 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 purposefulgift.com.

Kennedi's Story, by her mama

Post by Daylee Greene

It's amazing how priorities can change, given the circumstances. Before Kurtis and I got pregnant, we spent a lot of time talking about our future babies. We just *knew* our babies were going to be the most perfect human beings to ever grace this earth. When we found out we were having a girl, all we could talk about was how amazing we hoped she would be. Kurtis wanted a little girl he could dote on and take care of (Lord knows he didn't get that when he married me), and I wanted a mini me who embodied the best of both of our characteristics and personalities. I wanted her to have his gorgeous skin and my beautiful blue eyes. I wanted her to have the signature Mott nose but the rest of Kurtis' facial features. His mouth, his ears, his eyebrows. Some crazy wild hair that was equally mine and Kurtis'. She'd get charisma and personality from both of us-she'd have EVERYONE eating out of her hand. Mostly boys. Most of all her daddy. She would be beautiful, happy, and pleasant. She'd be chubby-rolls all over and not a single health issue. She'd be perfect. 

At 20 weeks, we changed those priorities. We decided we would be happy with all of the above, except the perfect health. We hoped she would still be beautiful, happy, chubby, but she wouldn't be in perfect health. That's alright, we could fix that. Just give us our little girl, and we'll fix the stuff that doesn't work so well.

At 25 weeks, we changed our priorities again. Considerably, this time. We no longer had hope for a future with her. She wasn't going to be chubby, she wasn't going to be healthy. She wasn't even going to live. So now we hoped for a pregnancy that went to term. We hoped that her health problems didn't give me health problems. We hoped that she was happy, but now there was a time limit on it. We hoped she was happy for right now. We no longer hoped she would be happy in life, we no longer hoped she would be chubby. Thunder thighs and a Buddha belly were no longer options for us. But that was ok, we still had hope. And no matter what happened, we knew she was going to be beautiful.

At 30 weeks, we had one hope: for her to be born alive. We hoped that she would experience our love first hand. We hoped she would hear our voices, feel our touch. More than anything, we wanted to hear our precious Kennedi Rose cry. I never thought that my greatest hope in life, the only priority I would have in my pregnancy, would be to hear my daughter cry. Health, happiness, and longevity be damned. I wanted my sweet baby to cry. I wanted her to take a big breath of sterile hospital air, fill up those tiny little lungs, and cry out for mommy and daddy to take care of her. I wanted a birth certificate. I just wanted ten minutes with her. We both did.

Unfortunately, we didn't get those ten minutes. Our sweet baby girl was born sleeping at 31 weeks. There was no crying (from our baby, anyway), no birth certificates, certainly no chubby cheeks. Just our tiny, lifeless, amazingly beautiful little girl. But, thanks to our shift in priorities, it wasn't an entirely devastating experience. By the time Kennedi came, we just wanted to be able to see and hold our daughter. The entire process had made her seem almost like a figment of our imaginations. We were planning a memorial service and making arrangements for cremation, and knowing that we had no physical future with Kenni often led us to forget that there was actually a baby inside of me. So, the last thing I wanted before Kennedi came, my last hope, my last priority, was to hold my daughter. I wanted to look at her and tell her how much she was loved, how much she was wanted, and how much she'd changed our lives. I wanted to tell her "thank you." And I was blessed enough to be able to do that.

Holding my daughter's 13 inch, 1 lb 3 oz body, and looking at all of her tiny, perfect features, made the preceding 11 weeks entirely worth it. Kennedi's path had been decided long before we knew of her existence, and the fact that I'd been chosen to be a part of that journey was, and still is, extremely humbling. Words can't express how proud I am that I created such a strong, perfect, beautiful little human being. I am so thankful that God chose me to protect one of His little angels while she was here on earth. She blessed my life in ways I could have never imagined. She blessed a lot of lives. She strengthened our marriage. Helped us to see our blessings. I miss her every day and my heart aches for my loss, but I know that I only hurt as much as I do because I love her as much as I do. I had no idea how empty my life was until I had Kennedi. A little piece of my heart died with her, but she'd made sure that it'd grown for the part, and for that I will forever be indebted to my amazing, feisty, strong, beautiful first daughter.

 

Ella's Story, by her mama

By Lisa Goodlett

It was 2008 and my husband and me had just married. We couldn't wait to start a family! My husband had just graduated college and the timing seemed right. We couldn't believe we got a positive only a month after we married! It seemed like fate!

Things started to go down hill right away. I started having debilitating cramps. When I went to the ER I was put on ectopic pregnancy watch. They couldn't see a baby but my pregnancy hormones indicated a baby should be seen. We spent over a week going in for daily ultrasounds. At one point the doctor told us it wasn't looking good. Eventually my cramps went away and I stopped going in for my ultrasounds because I didn't have health insurance. By the time I had my first real obgyn appointment I was 10 weeks and a baby was seen! Everything was looking up.

When I was 5 months pregnant my husband ended up losing his job and we were forced to relocate back to our home town. I had to find a new doctor and couldn't even be seen until I was 6 months pregnant.

I finally had a ultrasound appointment and I couldn't be more excited! I literally counted down the days. I have no idea why I never considered something could be wrong. All I thought about was finding out the gender.

The big day had finally arrived! I remember the ultrasound tech not turning the screen to face us or talking much, which made me uneasy. She only showed us her foot and told us we had to speak with the doctor because she had seen a birth defect but not to worry because she'd seen it before. I remember thinking maybe it was a Cleft lip or deformed finger, no big deal.

The doctor came in and told us it looked like our baby had gastroschisis (which meant that her intestines stuck outside of her body). I was told not to worry that she'd just need a surgery after birth. We were scheduled for a level two ultrasound a few days later.

When we went in for our ultrasound once again the ultrasound tech seemed like she was acting weird. She spent over a hour looking at her heart and would call in other doctors or techs from time to time. Finally, a doctor came in and asked us if we ever considered our baby might die. I was blown away. I remember sobbing uncontrollable well uncaring doctors looked on. My baby had a rare birth defect called, "limb body wall complex". She basically had so many birth birth defects she was incompatible with life.

My first question was, "what do we do"? I wasn't really sure what answer I was looking for. That's when the doctor said we could deliver the baby right away. I was concerned with any pain she would be and was told they could inject a medication into her amniotic fluid that would stop her heart.

After lots of crying and thought there was no way I could do it! I couldn't even imagine it. I wanted to carry her and love her for as long as I had her and that's what I did!

On July 30 I went into labor and had her by c-section on the 31st. She lived for 34mins in our arms and was loved every minute.

She was an absolutely beautiful baby!! 

Ella Lyn Wiggins 07/31/09

My Letter to Gloria

Written by Lisa VanSkike

 

At 19 weeks pregnant my husband and I learned that our first child, a daughter we named Gloria, would most likely not be coming home with us. She had polycystic kidneys and low fluid which meant her lungs would not develop strong enough to support life. She died thirteen hours after birth. It took me seven weeks after her death to finish this letter but I found a lot of peace and healing writing it for her.

 

My Letter to Gloria:

 

This morning you were the first thing I thought of. You always are. I can't believe I gave life to such a beautiful little girl. I can't believe it was you who I carried for so long. I loved being pregnant with you, I often wished I could keep you there forever and never have to worry about saying goodbye. A daughter. My daughter. I can't believe I was blessed with a daughter and then had to say goodbye.
Because you were so very sick inside me, I was prepared for you to come into this world looking different. You came and I looked at you, and you were more beautiful than I'd ever imagined. Everything about you was adorable, your little hands and nails, your little toes, your button nose.
 You were a true angel. Your name is an angel's name.

Gloria, I never dreamed you would have such long blond hair! I imagined you with dark hair like mine and your daddy's had been. I believe you might have turned into a red head, my dear. I believe your dark baby blue eyes would have turned green eventually, like mine and your Nana's. We hovered over you while you were in the NICU and talked about who we thought you looked like. We could never say for certain, but now when I look at our pictures of you, I see so much of your daddy. You had his ears, I think, his forehead, and cheeks. I look at your dad now and I see you, especially when he is sleeping. It makes my heart ache for you even more but I'm glad for any reminder of you.

I hope you got a good look at me too. Our eyes met when they brought you to me in your little isolette, but it still felt too far away. I hope you got to see me because I want you to know that it was me that had been dreaming of you for a very long time, it was me that played ballerina music for you, and it was me that constantly woke you up inside of me, just to feel you move. I'm your mother.

I wish I got to stare into your eyes more my little girl, but I was lucky to get that one moment with you, and I know it. They told me at every appointment that I wouldn't get to meet you in this world, but they were wrong. You were so strong and a fighter and I knew it. In my heart I always knew you would be born and we would be in the same room on earth, even if just for a moment.

I woke up thinking about my wedding hankerchief that I sent with you. It was my "something blue." It has my initial in blue and a little purple flower. Your grandma made it for me and I carried it with me on my wedding day. I wanted to give it to you on your own wedding day but now you have it with you forever. I wanted you to have something very special of mine and I wanted you to have a symbol of my love for your dad. I want you to know you are the product of our love for one another and you were our biggest dream, our greatest adventure.

You are ours, you will always be our first born.

I felt your spirit while I sat with you in the NICU, I felt such strength and determination coming from you, I'd never felt so much love. You did so good, Gloria. I am so proud of how hard you fought and how much you wanted to stay with us. I think you would have been an ornery little girl, stubborn but the biggest sweetheart, also like your dad.

When they told your daddy and I you were on your way to heaven, they handed you to me. Your heart rate and vital signs went up for a moment when they placed you on my chest. I hope that means you did know who was holding you and you knew that we were finally together again. You were so warm from the isolette and you felt so right to me. Everything about you felt right as you laid on my chest, we were truly meant for one another. I wanted your daddy to hold you as you left, I watched him take you and say your name to you and kiss your cheeks. You have the best daddy, he loves us both so much.

You went to heaven in peace and we held you tight for hours after. Your aunts and uncles, your grandparents, they got to hold you too. You have the best family, Gloria. You were the most wanted and cherished little girl. You've brought out the best in all of us and we are all closer because of you.

We placed your little body in the most beautiful satin white dress with little pink flowers, matching bonnet, and matching shoes. I sent with you the softest blanket I could find. You have a little pearl bracelet and I have a matching one. We chose the most beautiful, restful, peaceful place for your earthly spot. It is surrounded by fields and pastures and has the most amazing sunsets. Its near the church where your father and I said our wedding vows, where our friends and family celebrated with us, and where your story truly began. When I go visit you on my own, I find incredible peace. I sit down and pray and think of you. I find God and talk to Him about you.

 

Now what I have is signs from you and from God. I look for those signs everyday and pray for more. I pray for dreams of you. I pray for the kind of dream where I can see you so vividly and gaze into your eyes for as long as I want.
 I had so many earthly dreams for you, Gloria. We were going to spend each day together learning and cuddling. All the books we were going to read, the walks with the dogs, the playing, and memories we were going to make. I don't get those things with you, but I hope you are in heaven growing and rejoicing. I hope your great and great great grandparents are telling you all about your daddy and I when were were little.

 I hope that you will be the first angel I see when I get to heaven,
 I want you to be waiting for me, please be waiting for me.
 Until then, I'll always be thinking of you and I'll always be missing a piece of my heart.
I am yours forever and you are mine forever.
love,
your mommy

*Read more of Gloria's Story on Lisa's blog: Life, Love, Lemon...