My Son Only Lived for 80 Minutes, but He Helped Save Many Lives

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His life was brief. Only 80 short minutes. There was nothing we could do to save him. No procedures could fix the missing parts of his skull or brain (a condition known as anencephaly). We could only love him, celebrate his existence, and embrace the time we had with him.

The author with her husband and son

We did everything we could to make the most of his life, but since we could not prevent his death, we wanted to embrace that as well. To do this, we chose to allow our son to give back by participating in organ, tissue and whole body donation.

After our sweet boy passed, he was able to donate his liver, pancreas, umbilical cord blood, core blood from his heart, a skin sample and his whole body, all for various research studies. Due to his size and condition he did not qualify to donate for transplant, but we were more than happy to donate to research.

Although it is not very common to learn how donations to research are used, we were blessed to receive feedback about all of his gifts. This brought us comfort, healing, and joy to our hearts. His liver helped researchers who are trying to find a cure for cirrhosis and various liver diseases. His pancreas went to study type 1 diabetes, specifically hoping to treat children who have this condition. His cord blood went to researchers who are investigating the causes of anencephaly, the condition that took his life. His core blood and skin sample went to create cell lines to be preserved for future research studies. Each of his 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 eight months away was to help the researchers get a new insertion site for a lifesaving procedure passed 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 their proposed site and finally gained approval.

In the letter from the FDA approval board the researcher was told that the reason they were granted approval was due to the images of the neonate donor. Our little boy was that donor! My heart always beats a little faster when I share that part of his story! This new procedure is already being utilized around the world and children’s lives are already being saved.

The author's son

Yes, I miss my son. Yes, I wish we had been able to spend more than 80 minutes with him. Yes, I wish anencephaly was not part of our reality. But, that is not how our story was written.

Despite these things, I am proud of my son and the impact he has had on this world. My momma’s heart swells with pride when I think of the lives that will be saved because of his gifts.

I am thrilled to think that my son helped researchers come one step closer to finding a cure for debilitating conditions. I am happy for the families that will not have to say goodbye to their little ones and experience that heartbreak because of the new procedure our son helped develop. I am so thankful to say my son was a donor. For us, participating in donation added an extra layer of meaning to our son’s brief life.

My boy, Amalya Nathaniel (meaning “work of the Lord, given by God”), was indeed mighty! I couldn’t be more proud.

My husband and I established a nonprofit, Purposeful Gift, to teach families about various types of donations and offer them resources and support. To learn more about neonatal organ, eye, tissue, and whole body donation, please visit our website.

To see a documentary of our story, please visit iiam.org/Amalya.

Update from the author — After having our son in 2012, my husband and I have gone on to have two healthy children. We love parenting all our children — our son in heaven, and the sweet girls we have with us on earth.

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Baby Shane, After Completing His Bucket List in the Womb, Passes Away Peacefully

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Even the briefest of lives can have an impact on the world.

Baby Shane Michael Haley was born at 2:25 am on October 9th, according to the Prayers For Shane Facebook page. He died just a few hours later.

Shane was born with a terminal birth defect called anencephaly, where the baby is born without parts of the brain and skull, according to The Center For Disease Control and Prevention.

The Mighty previously covered the beautiful way his parents reacted to this sad news– they made their unborn child a baby “bucket list.”

Parents Jenna and Dan Haley decided to spend Jenna’s pregnancy showing their unborn son the world. They visited the Empire State Building, the pier in Wildwood, New Jersey, the Statue of Liberty, a Zac Brown Band concert and more, ABC reported.

Then, at 6:15 in the morning on October 9th, Shane passed away in his mother’s arms.

Shane spent his entire life in the arms of people that loved him unconditionally,” read a post on the Prayers For Shane Facebook page. “And I don’t think you could ask for a more beautiful life then that.”

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The Beautiful Way This Couple Responded to News That Their Unborn Child May Die

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Jenna and Dan Haley expected to spend a lifetime taking their soon-to-be son, Shane, to see and do all their favorite things. But, after their baby was diagnosed with a  fatal condition making it unlikely for him to survive long after his birth, they decided to make the most of the precious time they have with him.

Shane Michael Haley, who is due next month, was diagnosed with anencephaly two months into the pregnancy, according to the Prayers For Shane Facebook page.

Anencephaly is a serious neural birth defect where a baby is born without parts of the brain and skull, according to The Center For Disease Control and Prevention. About one in every 4,859 babies in the United States will be born with this condition, and almost all of them will die shortly after birth.

Knowing this, the Haleys decided not to waste a single moment of the little time they’ve been given with their son. They made a bucket list for Shane and created a Facebook page for friends and family to follow them on their adventures. In just over a month, the page has already gained nearly 170,000 followers.

“Shane has already proven to us that each day must be lived to the fullest and that is exactly what our little family is doing,” the page reads.

Shane’s bucket list contains all sorts of sights and activities that his parents wanted to be sure to share with him, including visiting the Empire State Building, the pier in Wildwood, New Jersey, and attending a Zac Brown Band concert, ABC reported.

 

“Most families wait until their baby is born to start making memories and traveling to places with them,” Dan Haley told the outlet. “We knew that our time with our son could be very limited, so we wanted to make the most of the time that we had with him.”

 

The young couple has demonstrated truly stunning courage and positivity in the face of tragedy.

It’s the hardest thing in the world, but you can make it through,” Jenna Haley told NBC. “We’re his parents and we’re going to take care of him as long as we can.”

 

Live Mighty. Like us on Facebook.

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My Daughter Was Alive for 23 Minutes, and Every Second Was Beautiful

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Twenty-three minutes.

That’s how long our daughter, Lyla, lived.

Twenty. Three. Minutes.

That’s shorter than I had hoped, yet longer than I expected.

Let me explain.

At our 20-week ultrasound, my husband and I learned we were having a girl. We also learned she had a terminal defect called Anencephaly. Our daughter was missing the majority of her brain, and this was not compatible with life. She had a brain stem, which told her heart to beat and gave her body movement, but she would not live.

When I first heard this, I sat wide-eyed, breathless, looking at the doctor. How do you respond when given news like this? I couldn’t move. Time slowed down as I looked around the room and met eyes with my husband. And then my thoughts began to race. Not compatible with life? This means death. This means no sweet baby with curly locks, no kisses, no diapers, no late nights, no first steps, no scraped knees, no hugs, no first day of school, no uncontrollable laughter or tickle fights or Ring around the Rosie, no prom, no wedding. I began to weep.

I was blindsided. This was my first pregnancy, and the joy that filled our hearts suddenly turned into despair. I had two options — be induced at 20 weeks, give birth and be done. Or — carry full term (which was completely safe for me to do) and meet our daughter, who might not be born alive — and if she was born alive, she would only live for a short while. We’d have to say goodbye as quickly as we had said hello. Those were my choices. Just those two. I ached for a third choice, silently begged for one that would mean life. But a third choice never came. My heart was broken.

I mean, sick-to-my-stomach, don’t-get-out-of-bed, weep-at-a-moment’s-notice broken. Some of the worst moments of my life. I remember lying on the floor at home and weeping because that’s all I could really do. Flat out, on my face, weeping for my little girl.

I decided (and my husband stood by my choice) to carry Lyla full-term, in hopes to say hello (if only for a moment), hold her in my arms, hopefully hear her heart beat and tell her how much I loved her.

But in the midst of all the anguish, in the midst of the storm, the sun began to shine ever so slightly. The moments of sadness were softly sprinkled with joy.

This may sound crazy, but the nine months and 23 minutes I knew this little gal were life-changing. Real. Raw. Eye-opening. Breathtaking. Beautiful. Bittersweet. Wild. And filled with joy.

Michelle Nagle and her husband, Tim, with their daughter, Lyla

Our sweet little babe.

We came to some sort of understanding that this short existence was to be her story. A long life wasn’t her tale to tell. We turned her brief time here with us into a gift, a blessing to us that we were even able to know her (in the womb) and hopefully for a short time on her birthday.

Yes, my heart was filled with so much sorrow, but Lyla reminded me what real joy felt like and that you cannot know one emotion without the other. Lyla made it known in my heart that life is fleeting and my loved ones deserve to know how much I cherish them. Her sweet little soul encouraged me to express my love to my family and friends. Even now, when I talk with those I love, the conversation usually ends with an unashamed “I love you.” Lyla taught me that. Her tiny existence spoke volumes. She slowed down sweet everyday moments. She reminded me to stop and watch the sunset, listen to birds chirping, appreciate the “death” of winter because it simply meant new life was coming soon, to fill my life with laughter, to cry without shame, to love with abandon, to speak up, to listen, to hear others, to try my very hardest to journey through life with a nonjudgmental heart. That everyone deserves joy, everyone is worthy of kindness, everyone deserves their chance to speak, everyone needs love. It may sound crazy that an unborn baby taught me these things, but she did. And it brings happiness to my heart.

Michelle Nagle and her husband, Tim, with their daughter, Lyla

Lyla was born on June 20th, 2007.

She was placed immediately in my arms. I asked the nurse if she had a heartbeat, and her answer was yes. I listened to that slowing heartbeat, and my heart was overcome with sorrow and peace.

For 23 minutes, I held her in my arms, I kissed her cheeks, touched her fingers and toes, loved on her with every ounce of my soul, shared her with my husband and listened to her heartbeat slowly fade. And then stop.

Without a doubt I wish she was here. I ache for her and wonder what she would be like, what she would look like, what she would sound like. This June, Lyla would be 7 years old. And I miss her still. But I do not stay in the sorrow too long. I search for the things she taught me, the people she touched. I tell her story when I can, to those who will listen. I remind them to love one another and love with their whole heart. I’m reminded of Lyla in beautiful moments, in songs we sing at church, in the love I see families express towards one another, in rainstorms, in beautiful blue skies, in quiet moments of reflection, in laughter between friends, in the sweet love I have for my husband and daughter, Eden, and the love they have for me. I am so glad I met her.

Because of Lyla, life is full and beautiful and brighter and sweeter and richer. It’s full of heartaches and disappointments, but also full of peace and joy, thankfulness and laughter. We have a 6-year-old daughter, Eden, who is the treasure of my heart. I truly believe I love her in an even deeper way because of my sweet Lyla. She still affects me today, and I hope she always will.

“When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” Kahlil Gibran

Miss you, sweet girl. Thank you for everything.

Love,

Mom

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Film Documents Life With Down Syndrome Like Never Before

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Sean Bogart has been on camera since he was a year old.

His filmmaking aunt and uncle, Didi and Richard Dobbs, began taping him to help themselves and others understand what it meant to live with Down syndrome. Their 28 years of footage is now scattered throughout their upcoming documentary, “Sean So Far.” But somewhere along the way, the film stopped being about Down syndrome.

In the trailer below, Bogart, 28, is wearing a neck brace. He’s sitting on a couch discussing the X-rays that were taken after an upper spinal surgery he had for his atlantoaxial instability, a condition that people with Down syndrome have an increased chance of getting.

Bogart had to put triathlon training on hold for 8 weeks to have and recover from the surgery. In the clip below, his aunt asks him what it was like to see his X-rays.

“Well actually,” Bogart says matter-of-factly, “I thought, ‘I look good in bones.'”

Didi Dobbs recalls this moment to The Mighty. “Who says that?” she says. “Sean always finds a side of things I can’t see.”

Today, Bogart is back to training with his triathlon partner, 19-year-old Troy Sundwall. They met through Unified Sports, a program that pairs athletes with intellectual disabilities and athletes without disabilities.  Together, Bogart and Sundwall will be the only two triathletes from Connecticut participating in the 2014 Special Olympics USA Games in June in Princeton, N.J. Their friendship is also a focus of “Sean So Far.”

Troy & Sean talking (1)

Twenty-eight years ago, when Bogart was diagnosed with Down syndrome, his aunt and uncle searched for information on the genetic disorder.

“It was the 80s, there was no Internet and we couldn’t find anything,” Didi Dobbs told The Mighty. “And everything we did find referred to [Down syndrome] as ‘mongolism.'”

Originally, they meant for their footage to be used for a what-you-need-to-know-about-Down-syndrome type of film. But the scenes they’ve captured are anything but clinical. They’re about a person.

“The story of the triathlon is the backbone of this film,” Richard Dobbs told The Mighty. “But, really, the triathlon is a metaphor.  The film is about Down syndrome, sure, but it’s also about perseverance, about family, about friendship.”

“It’s about being human,” Didi Dobbs adds.

The documentary won’t be complete until Bogart and Sundwall cross the finish line in June. A preview trailer is below.

The Dobbses hope that when people see the film, they’ll begin to look at their nephew the way they do and the way his training partner does.

“Their friendship is so real. Troy sometimes forgets Sean has Down syndrome,” Didi Dobbs told The Mighty. “Sometimes I do, too. He’s just a person, a person who brings so much joy to life.”

“I think the film will be helpful for anyone today who’s just gotten a Down syndrome diagnosis,” Richard Dobbs adds. “There’s this universal theme about what it means to meet a challenge — that’s what we’re trying to show.”

For updates on “Sean So Far,” visit Facebook.

If you’re interested in donating to this film’s production, head here.

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College Football Team Concocts Special Play So Fans With Muscular Dystrophy Can Join In

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Matt DeRiggi, 11, and Danny Garofalo, 16, are big-time Rutgers University football fans. In April, the two young men with Duchenne muscular dystrophy (DMD) got to do more than watch from the sidelines. 

The video below of a spring practice shows Matt and Danny executing a play on the field with RU’s team. A celebration breaks out afterward.

“[Danny] loved it,” his father, Dan, told NJ.com. “That’s what makes it all worth it. As small as something like that seems, it really is a big difference.”

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