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.

4000 Likes Giveaway: Winners!

This giveaway is now CLOSED. We have our winners!

Meagan Bryant - you've won an "I Chose Love" shirt, and
Kristin Wirth - you've won a "Choose Love" shirt!

Please send us a private message HERE within 24 hours to claim your prize!

*If you didn't win this giveaway, you can still purchase a beautiful new shirt in your baby's name <3. They are available this month only, so get yours today!

I Chose Love and Choose Love

~ ~ ~

We now have over 4000 likes on our Facebook page! 

Thank you for helping us reach the families who need us <3. 

As a THANK YOU, we are giving away TWO of our new shirts!

To Enter:
1. Comment below - or on our FB Page - and tell us why you'd like a shirt, 
2. Let us know which shirt you'd like (I Chose Love, or Choose Love)

You can have one extra entry by sharing our page or this post (leave a note in your comment so we know you enter you twice). 

We will be giving away one shirt to a mama or daddy who continued pregnancy after a fatal diagnosis, and one to anyone who supports Carrying to Birth!

You can see our shirts here:

For Carry to Birth Families

For Carry to Birth Supporters

A winner will be drawn on Monday, April 6th, and announced here. 

Good luck!

**Be sure to check out the post by our newest contributor Kellie Soper.
Today she's sharing her daughter Lily's story <3.

Lily's Story, by Her Mama

by Kellie Soper

Fear, excitement, anxiety, joy...all these mixed up emotions and so many more when I learned I was pregnant with my second child. 

The fear and anxiety came from worrying it was too soon and would be too much to handle. My son was only 10 months old when I found out I was pregnant. An 18 month old and a newborn?! The excitement and joy came from always wanting a big family and always wanting kids close in age. 

I was so happy to be giving my son a sibling! I had dreams and visions of them being the best of friends growing up. Sharing a room, sharing toys, sharing memories. My heart was so full when ever I thought of their future together.

 My husband and I drove to our 18 week ultrasound. He had taken the afternoon off and we were excited to see our baby and have a lunch date after the appointment. 

They did all the routine measurements, at least it seemed routine. I saw a perfect beating heart, ten fingers and ten toes. It didn't phase me at all that we still hadn't seen our sweet baby's profile when the tech stepped out of the room.

The doctor came in and I was still oblivious...all I remember was that perfectly beating four chamber heart. It was the first time I learned a strong heartbeat wouldn't be enough. The doctor said the very words that left me gasping for breath:

"Your baby has a condition known as Anencephaly."

I couldn't breathe. Unfortunately, I already knew what this meant for my child. It meant that even though she had a perfect beating heart, the baby would not live long after birth (if she was born alive at all). You see, even though my baby's heart was perfect, the brain and skull had not formed properly. My child was missing much of her brain and skull.

My husband put his face in his hands and started weeping. Without looking at him, I asked the doctor to tell us what we were having (we had not planned on finding out).

"You are having a girl."

And then I wept. I was having a daughter, the little girl my heart had always longed for, only I wouldn't get to keep her.

After she let me take it all in for a few minutes, she lovingly put her hand on my arm and said, "We can discuss your..."

I stopped her immediately knowing the word that was going to come next..."options". She was going to refer to my daughter as an option. She wasn't an option, she was mine. For better or worse, she was mine.

My reply, "No, we don't have options. We will keep her." She understood and didn't say anything else. I was grateful for that. In that moment of brokenness and despair I didn't have the energy to defend our "option".

I'd like to say from that moment on I was brave and strong and never questioned anything. But the truth is this, I went home, cried to my God, and begged him to not make me go through this. I begged him to just take her then and not make me go through the next several months. There is nothing brave or strong about that.

The truth is I was terrified. I had no idea how I would endure the next five months, let alone endure painful labor, contractions and pushing a baby out? How on earth could anyone knowingly survive that?

I know the answer now...grace. It's all grace. And it comes from a place deep down inside of you that you never knew existed. 

And that grace carries you through pregnancy. It guides you through labor. It helps you see your beautiful and perfectly made daughter, even though she has a fatal defect. It comforts you when you hold her lifeless body for the last time and it wraps itself around you as you get your last glimpses of her in this life. 

Most importantly, that grace warms your heart with memories that you will cherish forever. And those memories will carry you through the moments of your greatest despair when you miss your child the most.

I can still feel her squishy cheeks on my lips. I can look at my finger and still see her precious hand wrapped perfect around mine. And those chunky thighs that had two extra weeks to fatten up. I close my eyes and I can still see the smile through tears my husband had when holding his little girl.

It hurts. It hurts in ways I never imagined, but I wouldn't have it any other way. I can't imagine the grief if I never had these precious moments to cling to.

Being her mom is the greatest gift God has ever given me. She has taught me to love more deeply. She has taught me what real, unconditional, and selfless love is. She has made me a better wife, mom, sister, and friend. 

I miss her. I miss her every single minute of every single day. I would have done anything to save, but at the same time, I wouldn't trade her for anything in the world. 

And she is worth it, every second, every minute, every hour of every day. She is worth it. She is not an option, she is my daughter. 

She is mine.

My perfect Lily Frances was born sleeping on November 12, 2014. I carried her 42 weeks and 2 wonderful days. You can read more about our journey at www.ladysoper.blogspot.com

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Kellie Soper lives in Arizona and is wife to her amazing husband, Jason. Together they have two beautiful children, one on earth and one sweet, perfect soul in Heaven. Ted is a wild, silly, and rambunctious toddler. Their sweet Lily Frances was born sleeping on November 12, 2014. They learned at their 18 week ultrasound that Lily had a fatal neural tubal defect the doctors said was "incompatible with life." Kellie and Jason both knew Lily was not a "decision", but their precious daughter and they believe her life was of value, no matter what. She carried Lily with love for 42 weeks and 2 days. They miss her every single day, but are grateful for the honor and privilege of being her parents. You can read more about their family on Kellie's blog, Life and Love.

Nathanael's Story, by His Daddy

by Steve Wickham

We Knew it Wasn't Up to Us to Terminate.

As we paused to silently share some photographs we innocuously took that fateful morning—now nine months on, the tragedy done; our son, passed—there was a sense of the surreal, yes even now. We expect that we will never really know why this happened to us, and yet we are often told we were ‘chosen’. That doesn't sit very comfortably, I can tell you. Yet, people are only trying to help.

My wife, Sarah, and I took our then 15-month-old son with us to the Ultrasound rooms. It was July 1, 2014. A day none of us will forget. Another thing we will never forget is Ethan’s concern for his Mum and Dad as we cried on our way home. It was another eighteen days before we would find out our baby’s plight—amniocentesis confirming Pallister-Killian Syndrome (PKS), an incredibly rare condition affecting the 12th chromosome.

We were told at that early stage that our baby deserved “comfort and respect.” The looks on our geneticists’ faces when we said it wasn't our place to terminate spoke loudly, yet, respectfully they didn't say a word. They honoured what was the only thing we could do. We were praying for a miracle. So many people joined us praying that God might contort the formation of our little one’s internal organs, just so the lungs had room to develop. We had faith that anything could happen, and our role was to simply be faithful to our little life inside Sarah.

During the four months between diagnosis and Nathanael’s eventual stillbirth, we took many opportunities to take him out, to enjoy his movements inside the womb, to get to know our little boy. We treasured every memory we our imaginations could create. Our obstetrician nicknamed him a “cheeky little fellow” as he would often move suddenly during the eight amnioreduction procedures Sarah had—two litres of amniotic fluid were drained each week. Nathanael had lots of character!

When the time finally came for Nathanael to be born, our one and only hope was to meet him alive. Our expectation was that he would pass away quickly in Sarah’s arms. We were devastated when he passed away due to cord prolapse because of shoulder presentation during induction. We had grieved our loss well up until this point. The day after Nathanael was born, Heartfelt came in and took precious photographs for us. That night we sobbed and sobbed with Nathanael in our arms. But we had 179 hours with our little man until we said goodbye, finally, on November 7th.

We knew it wasn’t up to us to terminate. We felt an instant confirmation of this. We never doubted our decision. We received much peace, a peace that we cannot understand, I think, because we were resolute in the first instant. We stepped into our reality afresh each day and we were given the moment’s joy, procured by a very simple bravery to do what only we could do. Does any parent do anything less for their child?

Now we know that the experience we suffered is not just for us, but also for others, just as others’ experience sometimes give us encouragement. We have such a warmth in our hearts now for those who have lost a baby. We are connected through pain, and yet we are connected as sister and brother.

Nathanael will live on in our memory, forever!

I Chose Love

Families who Carry to Birth* all have different stories to tell. Each baby is unique, and each situation has it's own set of circumstances. But there's one thing that seems to always be present: Carrying to Birth is a decision based in love. The choice to refuse termination, to stand up for the baby's value, to put effort into making the most of their very sweet little life: all of these involve a deep and relentless love that says "my baby's life may not be long, but it'll be a beautiful as I can make it, for as long as possible". 

When given the choice, Carry to Birth families say "I choose LOVE'. 

It's something any Carry to Birth family can be proud of, and hold tight to when the immense pain of grief feels unbearable. 

I chose love, and it was worth it. 

Babies who are carried to birth are always filled with this love from head to toe. Just look at any photos of these sweet little ones and you can practically see that love glowing off them. You want to know what love looks like? It's a family whose love is so strong they know saying hello and goodbye in the same day will be worth it, just to meet their precious little baby. 

From now until April 15th, 2015, All That Love Can Do is running an "I Chose Love" fundraiser to support our work of providing help and resources to families who make this brave and beautiful decision to Carry to Birth. 

women's pink

women's blue

men's pink

men's blue

If you want to tell the world, "I chose love", you can purchase one of these beautiful shirts on our Booster Campaign Page HERE.

It's a great way to support our cause, help spread awareness about Carrying to Birth, and  - most importantly - tell your baby's story.

I Chose Love: Because all life is precious, even a short one <3

Order yours today!

*Note: Carry to Birth and Carry to Term are both ways of describing the act of continuing a pregnancy after learning the baby has a life-limiting or fatal condition. Because we know 40 weeks is not always possible due to certain conditions, our preferred term is Carry to Birth.

**Thank you to All That Glitters for the design help!

Sean's Story, by his Mama

By Sarah Hynes

I would like to share my story of my precious little boy Seán Caden Hynes who was born with something called Trisomy 18, otherwise known as Edwards Syndrome. This is the second most common syndrome in Ireland after Trisomy 21 - also known as Down Syndrome and the third most common syndrome is Trisomy 13 - also known Patau's Syndrome. 

A "Trisomy" means that the baby has an extra chromosome in some or all of the body's cells. In the case of Trisomy 18, the baby has three copies of chromosome 18. This causes many of the baby's organs to develop in an abnormal way. There are three types of Trisomy 18: Full Trisomy 18: (This is what Seán had). The extra chromosome is in every cell in the baby's body. This is by far the most common type of Trisomy 18. Partial Trisomy 18:The child has only part of an extra chromosome 18. That extra part may be attached to another chromosome in the egg or sperm (called a translocation). This type of Trisomy 18 is very rare. Mosaic Trisomy 18: The extra chromosome 18 is only in some of the baby's cells. This form of Trisomy 18 is also rare. 

Our story began on the 31st of March 2014, the day of our 20 week scan. We were attending the Rotunda Hospital in Dublin and were so excited to see our little bundle on the big screen. The nurse called us in to the scan room and began. We could see him wriggling around and kicking away and thought everything was fine until.....she stopped the scan, turned to us and said, 'we have a problem here, something doesn't look right with your baby and I think we need a second opinion'. She explained to us that there seemed to be some problems with our baby's heart and brain, and asked us to come back in the following day to see the doctor. That's literally all I remember from that day, I got up off the bed in tears and ran out of the hospital as fast as I could, we were in complete shock, this was not the news we were expecting to hear.

The following day we returned to meet with the medical team and discuss what was going to happen, we decided to have a special test called an amniocentesis done, that would confirm the diagnosis in a few days and then the doctors could 'fix' our baby, or at least that's what we thought. Having this test is the only regret I have from this whole experience. Looking back now I dont think we were given the chance to think about it properly, I felt very rushed in to it and also pushed in to having it done. 

Two days passed, we were living an absolute nightmare, not knowing what was wrong with our precious little bundle, and then we got the phone call that would change our lives forever. First we were told were having a boy, then the diagnosis - Trisomy 18, Edwards Syndrome.... and it was fatal. We had never heard of Edwards Syndrome before this. I have never felt pain like it in my life, to hear words like that, how do you even begin to take in the news that your precious little baby was sick, that there was no cure and that he was going to die???? I didnt want to listen, I just couldn't take it in, how could this have happened?? Was it something I did wrong, was it my fault?? Turns out it was nothing to do with myself or my husband, it was a 'fluke of nature'! 

Regardless of the diagnosis we knew that we wanted to give Seán the best possible chance of life, we did everything in our power to keep him safe and warm in there until he decided it was time to make an appearance. Doctors explained to us the risks of continuing on with the pregnancy, that we may never get to meet Seán alive. Unfortunately many babies with Trisomy 18 pass away in the womb early on in the pregnancy, there was also a risk of stillbirth, but we just wanted to give him the best possible chance to meet his family, his big sisters, aunts, uncles, cousins and grandparents. 

The next four months were probably the hardest days of my life, not knowing what was going to happen, trying to continue on as normal, it was torture. But Seán was a little fighter and made it all the way till the end, he was due August 11th and arrived on August 9th, breathing on his own and alive! We got our wish, we got to meet our little boy alive, he got to meet his family, and knew nothing but love for those 2 wonderful days. 

On August 11th at 2pm Seán grew his angel wings. I will never forget that day as long as Iive, a piece of me died that day with him, a piece I will never get back until the day we meet again. Our world just fell apart. Life can be so cruel, so unfair, why us, what did we ever do to deserve this??? But Seán has made us the proudest parents in the world, he has made us better people and for that we are forever grateful. 

I wanted to share this with whoever takes the time to read it, for anyone going through a similar situation, know that you are not alone and there is always someone there to talk. I made a promise to my angel that his memory will live on forever and that he will always be talked about everyday. Loosing Seán has been the hardest thing we have ever dealt with. Unfortunately this condition is more common than you would think, but a lot of people know nothing about it. So I have decided to share my story in the hope that it helps some other parent of a Trisomy child. 

Thanks for reading and remembering our beautiful boy Seán Caden Hynes, born @ 7.58pm, 09/08/14, weighing 5lbs 3ozs. 

Sleep tight little angel, love you to the moon and back xxxx

The Nightmare of Childloss

by Jenna Gassew

I lost my son October 9, 2014 just four short hours after his birth. That day was filled with mixed emotions. It’s one of those days where I experienced the absolute best and the absolute worst of all moments in my life. I never knew I could have so much hate and love for one simple date, but I do. When I think about the days leading up to delivery sweet memories come to mind. We had family over to celebrate with a cake for Shane’s 39 week mark, and had spent most of that weekend at Linvilla Orchards (our favorite pumpkin patch). We enjoyed every second we had with our little boy. Through labor and delivery I was surrounded by family and friends who were all excited for me to meet my little miracle, and when I did I can tell you he was - and always will be - perfect. His sweet eyes looked right at me and that’s when I knew it was all worth it, even the goodbye. 

Those four precious hours will always be the greatest four hours of my life and I am so thankful that we were able to have him for every single second he gave us. Shane Michael Haley was born into a family who loved him and always will.

After Shane had passed I held him with me for 27 more hours making sure he was cared for and held with the utmost respect. We had family and friends meet our little boy, as well as taking many pictures. I remember I didn't want to waste any time I had holding him, so I tried staying up for most of those 27 hours and I did. I remember Dan’s uncle had stopped over and I had just sat down to take a nap holding my Shane and when he left I think I started to nap. I remember having a dream of my Shane holding him while family and friends gathered round and then in an instant someone had said to me he’s gone and then I remember being woken up by my dad and Dan telling me it’s just a dream. I woke up looked at my son in my arms and thought this is no dream he really did pass. My heart felt so cheated that it couldn't just be a nightmare and I couldn't just wake up from it. I then stayed up the rest of the time I had with Shane until I had to give him over to the funeral director, and that was a living nightmare in itself.

When I went home the next couple days people stopped over to keep us company. We finished up things for his funeral and made it through arguably the toughest days. As time moved on I had a couple friends tell me they had Shane visit them in their dreams. I loved hearing anything about Shane. I loved just being able to hear his name. I thought maybe he will visit me in my dreams soon, but he never did. All I had was that one “nightmare” in the hospital as I held his sweet little body. Until a couple days ago; I had my second dream of Shane.

I was holding him and he was still with us and he smiled. I had yelled at Dan to hurry and capture his picture and he tried but he couldn't get the picture in time. Then someone had said "he’s gone" and I woke to Dan saying,” Jenn, it’s just a dream.” I was crying, and muttered out, “This is no nightmare, this is real, we lost Shane.”

You know that moment you get after a nightmare where you catch your breath and realize it’s just a dream? Those moments where you look around and can see everything is alright? I don’t have those anymore. These past five and a half months have been anything but easy and are my own living nightmare. Some days I wish I could sit back and think it’s all just a dream but I can’t, I’m stuck in a nightmare and there is no way out.  

Losing a child is a pain that I would never wish on anyone but it is also something no one can fully understand unless they went through it themselves. I wish more than anything I could hold my sweet Shane and just tell him I love him one more time. For now, I just pray for comfort and peace and that our sweet Shane continues to watch over us. I pray no  one ever has to be stuck in this nightmare, and if they are I hope they know they are not alone.

~ ~ ~

Jenna Gassew is from outside Philadelphia, Pennsylvania. She is a graduate of Rosemont College with a degree in Mathematics. She is the mother to a beautiful little boy in heaven, Shane Michael Haley. Shane was diagnosed with Anencephaly at 13 weeks gestation. Jenna and Shane’s father, Dan, decided to create a bucket-list on which they took Shane to various places such as Phillies games, New York City, and Ocean City, Maryland. Shane was born October 9, 2014 and lived for four precious hours where he spent his whole life loved. She continues to bring awareness to Anencephaly in honor of her son. More about Jenna, Dan, and Shane’s journey can be found on  their face book page, “Prayers for Shane.”