A Gift for Mother's Day

by Bethany Conkel

I was not expecting to find myself in the card aisle at our local grocery store. I was just trying to kill a little time and ended up there by mistake. It’s not an area of the store I tend to frequent. 

As I walked through, Mother’s Day cards seemed to jump off the rack. 

I briefly glanced at a card with characters from Disney’s 101 Dalmatians on it. A cute love note to mom was written in a clever ditty.  In that moment, I couldn’t help but wonder what type of card my son would have given me this year. Would it have been handmade with brightly colored scribbles or store bought with his favorite cartoon character printed on the card? Would he have given me a flower planted clumsily in a pot, or would he have helped to make breakfast-in-bed for me? 

It’s been 3-1/2 years since my son was born and passed all on the same day. Although it has been several years, I still wonder sometimes what he would have been like and what life my life would look like with him in it. What would my Mother’s Day turn out to be like with a 3-1/2-year-old little boy running around?

As I walked out of the aisle, I felt sad that I will never get a card from my son. I will never get to cherish a special Mother’s Day gift from him. As I continued to work my way through the store, I realized something. Although I will never get a physical gift from my son, he has still given me a gift. MANY GIFTS, in fact. 

The first gift my son gave me was the gift of motherhood. My sweet boy was my firstborn and made me a mother. Although the time I had to mother him in my arms was short, I still get to mother his memory daily! I will be forever thankful to him for making me a mother. 

My son also gave me the gift of empathy. Before saying hello and goodbye to my son, I never understood the loss of a baby. I had met a few bereaved mothers, and honestly never understood why the pain lingered, even years later. Now I know. Now I understand. Now I am able to connect with bereaved mothers, support them, and empathize with their feelings. 

My son gave me the gift of knowledge. Before receiving a terminal diagnosis for my son, I never knew families even faced such things. I had never heard of anencephaly, trisomy 18 or 13, limb body wall complex, or Potter’s syndrome. I did not know things like perinatal hospice, bereavement doulas, or neonatal organ donation even existed. Although learning about these things has been difficult, receiving the gift of knowledge about this world has changed my outlook on life and allowed me to help others in new ways. 

My son gave me the gift of friendship. I cannot even count the number of people I have met, connections I have made, and friendships I have forged because of my son. Some friendships are so deep that I feel like I gained extended family members.  I have met some truly incredible people, and my life has been enriched in so many ways because of them. Had it not been for my son, I never would have met these amazing individuals. 

My son has taught me that life is both fragile and precious, and it should be embraced -- a lesson that I very much view as a gift.  

Although my son isn’t here to give me a special hand-crafted bobble to place on my desk, or a beautifully colored picture to hang on my refrigerator, he continues to bless my heart and give to me in so many ways. His life has helped shape who I currently am as a person and continues to influence who I will become. This Mother’s Day, I am going to be thankful for the many gifts my son has given me. 

If you are a bereaved mother, I hope this Mother’s Day will be gentle for you. I encourage you to look for some special gifts that your little one has given you. I hope you are able to find something amazing. 

~ ~ ~

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.

The Love of a Grandfather: A Tribute

by Bethany Conkel

The following article is a tribute to an incredible grandfather who loved his grandson unconditionally.

This afternoon (Oct 2, 2015) I lost my father very unexpectedly from what we believe to be a heart attack. He was young – only 56. He was an amazing man, an incredible father, and a wonderful grandfather.

He was one of the first people we called when we learned my son had anencephaly and would not live long after birth (March / 2012). He was one of the people who encouraged us to carry our son to term, and not just carry him to term, but to fully embrace our son during my pregnancy and celebrate the time we had with him while he was still inside me. I remember my father telling me that he wanted to be a grandfather to our son – even if it was only during the pregnancy! He was devastated that our son would not be staying on earth long, and he said he wanted memories of his grandbaby regardless of when he had to make them. I remember looking at him and thinking, “There’s no way I can do that. No way can I celebrate during a pregnancy that I know will end in the death of my baby. How? How am I supposed to do that? How can I make happy memories, let alone allow others to do the same?” As we continued to talk, the idea of embracing this life fully began to grown on me and I was able to see the importance of what he was encouraging me to do. The idea of creating a bucket list took form and became a reality.

My father took part in the bucket list in many ways. He would talk to our son through my belly every time he saw me. He would often would kiss my pregnant belly and tell our son how much he loved him and how glad he was to be his grandpa. My dad also took the time to read to my son – he had written a novel several years before my pregnancy and he wanted to make sure his grandson heard his book! It took hours… and my dad loved each one of them. I would sit next to him on the couch and he would read and read and read; he finished the book shortly before my delivery date. My dad came to a special 3D ultrasound and beamed with pride as he watched Amalya move on the screen. My father, a long-time pastor, also incorporated my son into many of his sermon. He was truly able to make memories with his grandson.

My father was at the hospital the entire time on the day we delivered Amalya. He prayed over us before I left for my scheduled C-section and was one of the first to greet us in the hall when I was finished. He made sure to be the first grandparent to hold Amalya and ohhhh, did he beam with pride! 

When we realized that it was time for Amalya to pass away, my father sat next to me, laid his hands on him and prayed over him as his heart slowly stopped beating. He was truly a proud, proud grandpa!

My father insisted on being the one to perform our son’s memorial service, even though he knew it would be difficult for him. He spoke about the amazing impact our son had on the lives of people all over the world. He spoke of the legacy our son had through his organ and whole body donations. He spoke of the way the Lord used him, even with a brief life. He also spoke of the love he had for his grandson.

Shortly after receiving our diagnosis, I remember my father telling me that our journey was going to be difficult. He said there would be days where I would question everything. Days where I would cry. Days where I would be angry. Days where I would want to share my son with the world, and others where I would want to hide away. There would be days of joy and excitement, but also days of sorrow. He told me no matter what type of day it was that he would be there for me every step of the way. And, he was! I could always be honest with my dad about how I was feeling in regards to my son. He was always there to listen, support, encourage, and love me – regardless of the day, feelings, or emotions.

After Amalya’s brief time here on earth, my dad continued to be an amazing grandfather to the memory of our son. He loved to hear about the lasting impact our son had through his organ and tissue donations. He was thrilled for me every time I was invited to a public speaking event to share about Amalya’s life. He would also brag to complete strangers about the things his grandson had accomplished in his short time here. My father and I frequently had conversations about Amalya and he would always say how thankful he was to be involved in his life.

This past year, on our son’s 3rd birthday and heaven day (September 10, 2015) my Father made sure I was not alone, rather that I was able to spend the day with him and my mom. The last picture we have of my father was taken that day. He was kneeling the ground next to my mother blowing bubbles in memory of Amalya.

He was truly an amazing grandpa all the way to the end. 

The day before my father passed, we had a conversation over lunch about a few of the ways Amalya’s legacy continues to grow and some of the upcoming events that I will be speaking at. He was so proud!

When I learned that my dad passed I couldn’t help but think how excited he would be not only to meet his Lord and Savior, but also to see his grandson again!

Sometimes I think it is easy to forget about the love grandparents have for a grandchild whose life was (or will be) brief. It is easy to focus on the mom and dad, but for some reason the grandparents get overlooked. I want to take this moment and thank all of the grandparents who have loved their grandchild during a brief life and continue to love them even after they have passed. I hope you were able to make some amazing memories with your grandbaby while they were here on earth. If your grandbaby is still here, I hope you are able to embrace the time you have and are able to create memories with your grandbaby, even if it only during the pregnancy. Your love and support is so very, very appreciated. It is felt and has a lasting impact.

~ ~ ~

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.

Dear Death

By Bethany Conkel 

Dear Death,

It’s been 3 years since we met on September 10th. It was a beautiful day. Sun streamed through the hospital window as if everything was perfect in the world. It didn’t seem like the type of day where Death and a new mom would meet.

We both arrived at the hospital that morning with the same purpose: to greet a special little boy. Although our purpose was the same, our approach was very different. I came eager, ready to hold my little boy for the first time and welcome him into the world. I couldn’t wait to tell him how much we loved him and how proud his father and I were of him. I impatiently waited for the moment where I would be able to gaze into his eyes, kiss his little cheek, hold his precious hand, and admire his tiny toes. I came ready to soak in every ounce of my baby and shower him with as much love as I had in my being. I wanted to be sure that if he only felt one thing on this earth, it would be the love we had for him.

Your approach was much different. You were distant at first, waiting and observing from the shadows. I was thankful that you did not make your presence fully known right away, but gave us some time as a family to cherish our sweet baby boy. As time passed (way too quickly from my perspective) you slowly made yourself known. Then suddenly, I realized you were there, no longer in the shadows, but standing next to my boy, ready to take his hand and escort him into heaven.

I had been told many months before that this was going to happen. I was told that regardless of what I did, or how I approached the pregnancy, delivery, or care of my baby, that there was no hope. No avoiding you. I was told that YOU WOULD WIN.

Yet, in that moment, as I watched you gently greet my son and carefully take his hand, I did not feel as though you had won. Tears streamed down my face and my heart broke as I watched him leave with you, but deep down I knew this was not the end.

You had not won…  

Did my boy physically die that day? Yes, I don’t deny that fact. Yes, you fulfilled your role, just as I had fulfilled mine. But, Death, where your job ended that day, mine did not.

Over the last three years I have had the amazing privilege of helping the meaning of my son’s life continue to impact others. Yes, he died that day – but the meaning of his life, his importance, his legacy, his memory– none of those things died. They are very much alive. Growing. Developing. Building. My job has been to help his meaning continue to live on, even though he is no longer here.

No, You did not win that day!

So many people told me that, you -Death, were the end. But, that simply has not been true.  And, as long as I am alive and continue my job of keeping his memory alive, you will never truly be the end. You will never truly win.

I know one day we will meet again. One day you will arrive to take my hand and escort me into eternity. Although I do not look forward to that day, I do look forward being able to meet my little boy again Heaven Side. I would like to think that I will smile as I take your hand, knowing that I am holding the same hand my boy held many years before. Hopefully, when it is my turn to go with you, my loved ones will not allow you to win that day, rather just allow you to fulfill your role.

In a way, I feel as though I should thank you. You did a job I could not. You assisted my boy in meeting his Lord and Savior. I may have not liked it when you did your job, but I’m glad to know he was not alone in that moment. I’m glad to know he went from my hands, to yours, to our Lord’s. My momma’s heart is at peace knowing he was always holding someone’s hand.

So, Death, as I reflect on our meeting 3 years ago, I’m glad it was different than I was told it would be. I’m glad you were not the end and that you did not truly win. I’m glad the essence of my sweet boy lives on and that I get to help make that possible.

Sincerely,

Amalya Nathaniel’s Momma

~ ~ ~

Sweet Boy,

We love you. We miss you. We are proud of you. You have continued to impact the world in mighty ways, and for that we are thankful. We are so glad you are part of our lives. Happy 3^rd Birthday and Heaven Day. We look forward to the time when we get to see you again.

With all our love,

Mommy and Daddy

~ ~ ~

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.

Truths of the Journey

By Bethany Conkel

Dear Brave Momma and Poppa,

I’m sitting here today thinking of you. I call you “brave” because I know you are walking a journey you never asked to walk – a journey you probably never even dreamed of walking – yet here you are. I imagine you might be muddling through the best you can, doing what you need to do to keep your head above water. Some days are good, other days are horrid.

Navigating this seemingly endless road is so complex. At times it can be dark, overwhelming, and gut-wrenchingly painful. Other times it can be filled with joy, pure love, and beauty. Although you are willing to move forward each day out of love for your baby, it does not change the difficulty level or the weariness that sometimes comes. Despite this, you still continue to move forward. This is why you are brave.

Each journey is unique and filled with different challenges as well as surprise blessings. And, each stage of your journey, from newly diagnosed, to carrying your baby, to saying hello and goodbye, to keeping your sweet one’s memory alive after they are gone, has its own set of highs, lows, and obstacles.

Sadly, as you walk this road, not only are you going to be faced with the internal struggle of navigating this ever evolving path, but you will also be met with something else unexpected – the judgment of others. This is not something that is often talked about openly or addressed. We want to think that the people around us are going to be kind, loving, and supportive. We want to believe that society is going to embrace this new journey along with us. After all, we live in a world that preaches “tolerance” and “acceptance” – yet those concepts do not always apply to the “taboo” that is our reality.

Although you will find that many will live up to the expectation of kindness and understanding that we hope for, not everyone is going to understand the love you have for your baby. People you expect to offer support may fail you. People you thought were your friends may vanish. People you love dearly may question your choices. Total strangers may say hurtful or nasty things to you out of ignorance (this is especially true if you share your journey publicly). Some people will never understand the approach you have chosen to take. Many will never be able to FULLY comprehend that you are doing your best to parent your little one during an impossible situation. Others will never grasp that you are truly making each choice out of pure love for your precious baby.

As you encounter these people, please know that during this journey, the seed of love that you have for your baby, planted deep in your heart, will grow and take root. As it does, it will provide stability and strength for you. It will create a layer of protection from the hurtful people, and keep the people who truly love you and your baby close. This seed of love is what keeps you moving forward despite the roadblocks and hurdles.

Oh, dear sweet Momma and Pappa, I want to encourage you – KEEP LOVING YOUR BABY! Keep making the choices you know are best for your little one. Stand strong in the approach you have decided to take as a family. YOU are the BEST parent this little one could possibly have. Regardless of what others say or do, know that YOU are the best advocate, voice, and protection for your little one. As hard as it is, tune out the negative people. Allow people to walk away if they are unable to understand your choices. Embrace those who are willing to show you love and support. Focus on the people who have come alongside you, and who are willing to celebrate the amazing little person you have chosen to treasure. Overlook the nasty comments when they come, and re-read the ones that are overflowing with words of blessing.

Yes, this journey is complex. No, you never asked to be here. But, since you must brave this road…continue to love your little one fiercely!

From my heart to yours,

Bethany

~ ~ ~

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.

I'll Fly Away

by Bethany Conkel

Our church was full, but I felt alone standing in my row as worship began. I struggled to focus on the music, overwhelmed with thoughts, feelings, and emotions. In less than 24 hours I would be meeting my son for the first time, and most likely be saying goodbye to him shortly after. I stood there; joyful anticipation holding one hand and extreme grief holding the other.

The music, which had been playing in the background, suddenly penetrated my thoughts -

Some glad morning when this life is o'er,

I'll fly away.

I couldn’t believe it… THIS song TODAY?!?! The day before my sweet boy will be born then, most likely “fly away”? My heart froze. Suddenly, “some glad morning” became, “tomorrow morning” and “when this life…” became “when HIS life is over, he’ll fly away”… hot tears streamed down my face.

I gazed at my belly. My heart poured out the words I couldn’t bring my lips to form: Sweet baby, I’m just not ready for you to fly away.

To that home on God's celestial shore,

I'll fly away.

Ohhh little boy, I know that will be your home and that it will be an amazing home for you, I just had really wanted your home to be MY home. I really wanted you to STAY. I never had planned for you to fly away.

I'll fly away, oh glory, I'll fly away.

When I die, Hallelujah, by and by,

I'll fly away.

Is that what you will be singing little one? Will death be a Hallelujah moment for you? I know in that moment you will see our savior’s face and it will be wonderful, but, oh son, MY heart will break into tiny pieces when it happens. Do you really need to fly away?

When the shadows of this life have gone,

I’ll fly away

Sweetheart, I’m sorry you have had to spend your life in the shadows of my belly. I wish I could have introduced you to the light and beauty of this world, but I know you will soon see the beauty and light of your eternal home, I just wish it didn’t mean you will have to fly away.

Like a bird from prison bars has flown,

I’ll fly away

My love, soon you will be free. Free from the condition that has limited your life. Free from the potential pain and suffering of this life. I am glad you will be free but, my arms will ache for you once you fly away.

Just a few more weary days and then,

I'll fly away.

Oh, my precious boy, I hope the days have not been only weary for you. I know this journey has been long and difficult and you have heard the echo of my tears as they hit my belly, but son, I hope you have also heard my words of love and that those words reverberated through your being. I hope you felt the joy that you brought us and were able to sense the celebrations taking place around you as we embraced the time we had as you grew inside me. We truly tried to make the most of our time before you had to fly away.

To that land where joy will never end, I'll fly away.

My child, it brings me comfort to know that you will be in a land full of joy. Every momma wants their child to have a life full of joy. I just wish I could have experienced that joy with you. My heart will long to meet you there once it’s my turn to fly away.

I'll fly away, oh glory, I'll fly away.

When I die, Hallelujah, by and by,

I'll fly away.

Son, how I wish I could sing Hallelujah with you, but sweetheart, I fear my heart just won’t be strong enough to do so as you fly away.

Oh I'll fly away, oh glory, I'll fly away in the morning

When I die, Hallelujah, by and by,

I’ll fly away.

Ohhh my love, I stand here broken because the morning will come too soon. Before I know it I’ll kiss your cheek, hold your hand, and say goodbye as you take a piece of my heart and fly away…

~ ~ ~

I'll fly away, by Albert Brumley, sung by Johnny Cash. 

~ ~ ~

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.

I Didn't Know

by Bethany Conkel

I didn’t know he would steal my heart.

I didn’t know my arms would never be the same after holding him.

I didn’t know that his image would be imprinted in my mind forever.

I didn’t know that a hint of his fragrance would bring me right back to that moment when they placed him on my chest.

I didn’t know that so many things would make me think of him.

I didn’t know I would miss him so much after having such a short time with him.

I didn’t know that he would make me more compassionate and loving.

I didn’t know that he would allow me to love his father even more.

I didn’t know he would make me a better mother.

I didn’t know he would change the way I viewed the loss of a loved one.

I didn’t know that he would inspire me to help others walking this road.

I didn’t know he would allow me to have deeper friendships.

I didn’t know he would teach me to not take things for granted.

I didn’t know his existence would encourage me to become educated on topics I didn’t even know existed before he came along.

I didn’t know that he would have a mighty, mighty, impact on this world.

I didn’t know that others’ lives would be saved because of him.

I didn’t know he would be loved by so many people.

I didn’t know that he would give me something to rejoice over and be thankful for.

I didn’t know that he would teach me how joy can permeate sorrow.

I didn’t know he would be worth every moment of pain and heartache.

I didn’t know I could (or would) love him so deeply.

I didn’t know my life would be forever changed.

I just didn’t know…

I was asked why I didn’t end my pregnancy if I already KNEW what would happen…

The fact is I DIDN’T KNOW. And, if I had ended my pregnancy because of what I thought I KNEW, I would have never truly KNOWN…

~ ~ ~

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.

Myths and Facts of Neonatal Organ Donation

By Bethany Conkel

Two weeks ago, in honor of National Donate Life Awareness Month, I shared how neonatal donation has impacted my life and how it has allowed my son to have a lasting legacy. Today I want to talk about some of the myths and facts surrounding neonatal donation options.

Before I start, I want to be clear on one thing: I think each and every life has intrinsic and inherent value. Each one of our precious babies has had an impact on the lives of others and this world. I do not believe donation makes a life “more valuable,” nor do I believe that families who chose to donate are “better” in any way. I do, however, believe that donation can add an extra layer of meaning to a life that is brief and that donation is one way to create a lasting legacy for our babies. I also believe that families should be given the choice to participate in donation, and then supported equally regardless of what they decide about donation.

With that said, I would also like to point out that the world of neonatal donation has been growing and advancing in big ways over the past few years. What was available ten years ago is much different than what was available five years ago, and that is much different than what was available two years ago, and that is even different than what is available NOW. So, if you read something and say “that’s not what I was told”, you are probably are correct, that wasn’t what you are told, but there is a good chance things have changed.

Myths and facts of neonatal donation:

Myth: My baby will be alive while the surgery takes place, or my baby will be in pain if they participate in donation.

Fact: A recovery surgery only takes place AFTER a baby has passed way and their heart is no longer beating. Neonatal donation NEVER takes place while the baby is still alive. Your baby will not feel any pain if they participate in donation.

Myth: My baby will need to be taken to the surgery moments after they pass away.

Fact: In neonatal donation situations, most of the time there is a window of time before a recovery surgery would need to take place. Often you could have anywhere from 45 minutes to 12 hours with your baby after they pass away before a recovery surgery would need to take place, depending on what is being donated.


Myth: Even if my baby doesn’t need to go for surgery right away, I will still lose time because I won’t get to see them again after the surgery.

Fact: In most cases, if the family desires, arrangements can be made with the recovery team and the hospital to have your baby brought back to you after the surgery so you can continue spending time with your baby and making memories.

Myth: my baby would not qualify for donation because….

Fact: Yes, it is true that there are qualifications (weight, gestation age, when death occurs, your baby’s condition, the organ procurement organization that is near you, your delivery hospital, etc.) to participate in any form of donation but, due to recent developments in neonatal donation:

A) In some cases, organ/tissue donation for research may occur as early as 28 weeks gestation. In some cases, organ/tissue for transplant may occur as early as 36 weeks gestation.

B) There is no minimum weight requirement to donate to research.

C) Babies with a variety of conditions including (but not limited to): anencephaly, acrania, trisomy 18, and hypoplastic left heart syndrome can donate to research and, in some situations, transplant.

D) The same exact process is used to recover organs/tissue for transplant as for research.

Myth: The only type of donation that “really helps” is organ or tissue donation for transplant.

Fact: Organ donation for research is just as important as organ donation for transplant. Donation for research is also the most viable option for most situations. Often researchers are using gifted organs or tissue with hopes of curing pediatric illnesses. In many cases, neonatal organs produce enzymes not found later in life, so these gifts are priceless from the research perspective.

Myth: My (_____) told me donation wasn’t an option, and it must be true.

Fact: Due to the fact that things are changing continually in the world of neonatal donation, many times doctors, nurses, genetic specialists, other loss moms, and even some employees of organ procurement organizations are not familiar with the most CURRENT options for neonates. If you would like to participate in some form of donation, but were told nothing exists, please be persistent; do not take the first “no” as a final answer.


To learn more about neonatal donation please visit Purposeful Gift.

Did today’s article make you think of a question about neonatal donation? Feel free to chime in below with your questions, send a private message to All That Love Can Do, or contact me via Purposeful Gift. I would be more than happy to answer your questions.

Was your baby able to participate in neonatal donation? I would love to hear from you. Please comment below or contact me via Purposeful Gift.

If you are still pregnancy and considering participating in donation and would like help through the process, contact me via Purposeful Gift. I would be honored to walk you through the process and offer support.

~ ~ ~

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.