Hope in the Midst of Infant Loss: Edison's Story

Edison’s Story: Hope in the Midst of Infant Loss

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Infant and pregnancy loss affects so many of us. In 2017 my family experienced the unexpected loss of my sweet nephew, Edison. He has made a permanent impact on so many lives in so many ways, so I invited my sister, Becca, to share Edison’s story, and how they found Hope in the midst of loss.

Edison's story, infant bereavement- a baby in the nicu

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Hi! I’m Becca – if you’ve read the post about why you should hire a birth doula, you might remember me. I’m an extroverted, Jesus-loving, coffee-obsessed wife and homeschooling mom of 3 boys with a passion for all things related to birth. (I also happen to be Mama Shark’s sister.)

Edison’s Story: The Beginning

My husband Kyle and I found out we were pregnant with our second baby shortly after we celebrated the 2nd birthday of our oldest son, Quentin. We were thrilled and so excited to be welcoming another baby into our family.

Since Quentin’s birth, I had developed a passion for all things related to pregnancy, labor, birth, and the postpartum period. I also began volunteering with a local non-profit called The Motherhood Collective, which is all about equipping, educating, and empowering women from preconception to postpartum. I was surrounded by birth and babies and learning more about what options were available to me regarding pregnancy care and choices in childbirth.

Quentin was born at our local hospital, under the care of nurse-midwives. My labor with him was long but not traumatic, though there were some things I wished had gone differently. I also managed to give birth to him without any pain medication, even though my labor was at times augmented with pitocin to make my contractions stronger and help labor to progress.

Having “proven” to myself that I was capable of making it through labor and delivery without use of pain medications or epidural anesthesia and longing for a more intimate birth setting, Kyle and I decided together to pursue care with a Certified Professional Midwife at a local birth center.

Basically, it was a homebirth away from home – cozy rooms, limited access to interventions, the possibility of waterbirth, knowing exactly who would be there for labor and delivery, and being able to be free in our own space to bring this baby into the world.

Edison’s Story: The Pregnancy

I loved the prenatal care I received from my midwife. She was very proactive in her care, and as I had hoped, I developed a relationship with her throughout my pregnancy that was deeper than I had experienced when bouncing between providers during my previous pregnancy.

My pregnancy with Edison was pretty much perfect. I focused on eating well, taking quality vitamins and supplements, hired a doula, and read everything I could get my hands on about natural birth. I was excited that the care I was receiving was very much customized and much of it was at my discretion – basically, instead of being told “this is what you need to do”, I was given evidenced-based information and asked “what would you like to do?”

Edison’s due date landed on Easter 2017, and I definitely thought about how special it would be to have a baby on Resurrection Sunday. I imagined snuggling him close in bed at the birth center, tenderly singing the second verse from my favorite Easter song, “Because He Lives”:

How sweet to hold a newborn baby
and feel the pride and joy he brings
but sweeter still the calm assurance
this child can face uncertain days because He lives.

-“Because He Lives” Gloria Gaither and William J. Gaither, 1999
pregnant woman who would experience infant loss

Well, his due date came and went and the waiting game began in earnest. The Wednesday after he was due, I took Quentin to our local kids museum to meet up with a friend, went to a chiropractic appointment (and asked that if there was any labor-inducing magic available), and continued waiting.

That evening about 10:00, I was sitting on our couch reading when Quentin called out for me from his bedroom. As I walked up the stairs, I thought “oh no! Did I just pee myself??” but once I reached the top of the stairs I knew I hadn’t – my water had broken!

Edison’s Story: The Labor

I excitedly ran downstairs and told Kyle my water broke. I proceeded to text and call my midwife, doula, and parents, all while Kyle was chasing me around cleaning up the dripping amniotic fluid and asking me to PLEASE stay in one place until I got a pad on. Whoops.

At the advice of my doula, Kyle and I went to bed to try to sleep before labor became stronger. Kyle quickly fell asleep, and I tried, unsuccessfully. With Quentin’s labor, my water had broken but contractions didn’t come for several hours. So, I was actually quite pleased this time when contractions started up on their own and definitely settled into a gradually-growing-stronger-and-closer pattern.

Around midnight, I was on my hands and knees on the bed laboring and decided to go downstairs to let Kyle get some more sleep. I hung out on the birth ball for a while and went back up to check with Kyle.

He noticed how I was coping with the contractions and suggested we start packing up for the drive to the birth center. Since it was a 45 minute drive, we didn’t want to wait too long and end up driving through transition!

After a few more hours, I called my midwife again and we decided that we would begin to make our way to the birth center. My friend came over to stay with Quentin while he slept, and we made the journey to the birth center, meeting our doula there.

I plugged in my labor playlist as we drove, and the song “Sovereign Over Us” came on as we turned into the birth center driveway. Kyle remarked that it was a great song that he had never heard before. (That will be important to the story later!)

My midwife assessed how I was coping through labor, listened to Edison’s heartbeat, and felt his position along with the rest of the medical things she needed to do. My labor had slowed down a bit during the drive, so we all laid down to rest for a bit.

My doula arrived and so did my mom who we planned to have present at the birth. Around 6, as the sun started to come up, we decided to get to work to get this baby out. Kyle and I went for a few walks outside up and down the birth center’s VERY steep driveway, which helped my contractions strengthen.

My doula helped us with various comfort measures, and encouraged me to try some different positions to try to get Edison’s head to descend. My labor was becoming stronger, but Edison’s head wasn’t engaging in my pelvis, which is necessary for birth to actually take place.

At the advice of my midwife and doula, we tried some more techniques to bring on stronger contractions. They worked – I launched into transition and all the accompanying noises, movements, and “I can’t do this anymore!” thoughts.

I was hoping to finish laboring and deliver in the birth pool, so the birth assistants began getting the water to the correct temperature as I continued laboring very strongly. I was elated when they told me I could finally get into the tub.

In my head, I was convinced that I was just now entering active labor and probably still had hours of work left to do. I hadn’t had any cervical checks because I didn’t need them, so there were no numbers to back up that idea – mostly I was trying to psyche myself out of thinking I was in transition already.

Edison’s Story: The Moment It All Changed

As I lowered down into the water and relaxed just for a moment, I experienced a massive contraction that came with a surprising urge to push! I called out to my midwife “I feel like pushing! Is that ok???” She calmly responded “just listen to your body” so I did, and I began to push.

However, as soon as I started to push I felt something slip out. I was certain it couldn’t be any part of Edison yet, so I quickly and with great confusion reached down and felt…cord. His umbilical cord had begun to come out and a loop of it was now dangling between my legs.

When I felt the cord, a thousand alarm bells went off in my head. It was a lightning-flash change that I immediately knew was going to alter the rest of this birth and potentially Edison’s life. I had read enough about birth and knew enough about birth emergencies to know that umbilical cord prolapse was one of the few true emergencies that call for immediate C-section delivery.

When the umbilical cord prolapses, it becomes wedged between the baby’s head and the cervix. The weight of the baby pressing against the cord cuts off circulation, which means that the baby is unable to receive oxygen from the placenta. The temporary solution is to manually elevate the baby’s head off the cord, and the ultimate fix is to deliver the baby via C-section as soon as possible.

“There’s cord!” I yelled out to my midwife, and everyone in the room flew into action. I was helped out of the birth pool and onto the bed, where I was placed in a position with my chest down and knees up, to try to help gravity pull Edison away from my cervix.

As the birth assistants called 911, my midwife inserted her hand to push his head back and off the cord. I was terrified, knowing the magnitude of the emergency and its life-threatening possibilities. I screamed out “God save my baby!” many times, while fighting contractions that came steadily and threatened to wedge Edison’s head further down. My doula knelt on the bed bedside me, praying in my ear.

In an attempt to try to avoid the ambulance transport and C-section, my midwife instructed me to push with all my might – if Edison could be born very quickly, he would be ok. But after a brief pushing attempt, it was clear that he was not ready to come out yet. So, I stopped pushing and my midwife replaced her hand to hold pressure against his head.

Edison’s Story: The Delivery

Time seemed to stand still and rush by all at once – labor already makes time pass in strange ways, and the adrenaline that was now coursing through me confused it even more. All at once the EMS team arrived- though only after they had to be called to ask why they weren’t already there, as they had taken much too long given their proximity to the birth center.

It was quickly apparent that those who were responding did not understand the dire emergency that was unfolding, or the fact that Edison’s life was at stake. It is certainly a muddy memory because of everything happening both inside my body and in the room, but the head of the EMS team began to argue with my midwife about everything- from the need to take my vitals to whether or not she could ride in the ambulance.

Meanwhile, I was yelling at them to “take me to the hospital for a C-section!” because I knew that every moment wasted was making Edison’s possibility of survival more and more tenuous.

Eventually I was moved onto a stretcher, still with my chest flat on the surface and my knees holding my backside in the air. The EMS team (against what should be protocol) refused to allow my midwife to ride in the ambulance. They allowed my husband Kyle to ride in the front, but I was alone in the back with two of them, naked except for a bra, still trying desperately to stop my body from spontaneously pushing.

As I rode, they administered oxygen to me to try to get more in my blood to get extra to Edison. They also started an IV along the way. When they called ahead to the hospital, whoever they spoke to instructed them to manually elevate Edison’s head off of my cervix to stop the pressure on the cord.

Because they had forced my midwife to stay behind, no one had been keeping pressure on his head until they received that instruction. I do not know how many minutes went by like that, but I do know that during each one, my baby was unable to receive oxygen.

Thankfully the trip to the hospital was a short one, and I was whisked away to the OR as soon as we arrived. While being pushed down the hall on a stretcher (still in the same position), the OB on duty quickly introduced herself and asked a few questions – how far along was I, when did my labor start, how long had it been since I ate. I was flipped onto my back on the operating table and felt a searing pain.

I sat up and demanded “What are you doing????” and someone told me they were inserting a catheter into my bladder. Then a mask was placed over my face, and I was told to breathe deeply 10 times. I don’t remember anything past breath number 3.

Edison's story; infant loss

While I was under general anesthesia, Edison was delivered via C-section. The surgical notes tell me that when I arrived, they were still able to feel a very slow pulse in his cord. He was fighting as much as he could.

His first two APGAR scores were 1 and 2, and he had to be resuscitated as soon as he was delivered. He was intubated and rushed into the NICU.

Kyle was not allowed in the operating room, but he followed Edison to the NICU where he saw his barely-alive, just-born baby boy experiencing seizure after seizure while his umbilical cord was split apart for quick access to his bloodstream and probes and sensors of various kinds were attached all over his body.

Edison’s Story: The NICU

Kyle was with me as I woke up from the anesthesia. I remember going in and out of consciousness, asking him every time “is Edison alive? Is he ok?” My kind, compassionate husband told me that Edison was alive, but he really didn’t know how to answer any questions about his condition.

I was an absolute sobbing mess, and I don’t know how long I stayed in the recovery room before I was finally with it enough to be wheeled, still on the operating table, up to the NICU to see my baby for the first time.

mother reaching out to infant Edison

I will never forget my first look at Edison. He was laying in the open NICU bassinet, his head jerking side to side as he continued to have seizures, not making a sound.

While I know that there were innumerable tubes and wires attached to him, my first memory actually doesn’t include any – all I remember seeing is my baby.

But it was not at all what I had expected. I was terrified for him, still so confused by everything that had happened, and completely exhausted. I was allowed to reach out and touch him briefly and then taken down to my room on the mother-baby hall.

The rest of that first day with Edison is very much a blur. I remember being told that Edison was on a special cooling mat that was designed to prevent any further brain trauma and that he would be on that mat for 3 days.

The lactation consultant came into my room with the hospital breastpump and showed me how to use it, turning the flanges upside down to catch the tiny amounts of colostrum that we put into slender syringes and marked with time and date. I drank some broth, cried, and talked to family. My mom had followed the ambulance to the hospital along with my midwife. I’m sure I also saw my Dad and our oldest son Quentin at some point, too.

Edison’s Story: The Waiting

I began to pump every 3 hours around the clock, even though Edison was not able to take any breastmilk yet. We still had no idea what his prognosis was, though it certainly didn’t look good. I do remember being incredibly optimistic for the first few days, especially while he was still on the cooling mat.

We were told that when the time came to warm him up, it would be very telling about how much brain damage had been done. Until that time, I was very hopeful that he would be able to recover. I was praying, probably more constantly than I ever had before in my life, asking God to heal Edison. I knew that God had formed his brain once, and it wouldn’t be a difficult task for Him to do it again if that was His plan.

Eventually, more family joined us at the hospital – Kyle’s parents arrived from several states away, and my sister and her family came into town, too. We took turns visiting Edison in his NICU pod, washing our hands and arms for the required 2 minutes before going to his little space, gently touching his arms and legs without rubbing them, talking to him, watching for any tiny movements of his body.

He was so different than the other babies in his NICU pod – we weren’t allowed to get close to them, but it was easy to see that the other babies around him were tiny, fragile little things with cries that sounded like mewing kittens. In contrast, Edison was full-term, over 8lbs with chubby cheeks and a full head of hair – but he was silent.

family looking at Edison

When we introduced Quentin to Edison for the first time, he was so sweetly confused. “He isn’t moving,” he said in his almost-3-year-old voice. Quentin was a very prepared older brother, having snuggled “his baby” (in my belly) every night before bed for months.

He had excitedly talked about the baby getting his nutrients from the placenta, came to prenatal appointments with me, and listened to the sound of Edison’s heartbeat recorded on my phone.

He had expected to meet his baby brother soon after birth and to ride home with us just a few hours later. So, when Quentin saw Edison for the first time laying still, not in mommy’s arms, and hooked up to lots of machines, he was understandably very confused. But, he was still totally smitten.

Although the exact sequence of Edison’s days is hard to remember through the exhaustion and emotional drainage of the time, a few very significant things happened when he was a few days old. I was discharged from the hospital, so we had to find a place to stay.

Because the birth center was in a different city than our home, the hospital was about an hour away and there was no way we could make that trek daily. Thankfully, Kyle and I were able to stay at the Ronald McDonald house just down the street. We spent every waking moment that we could with Edison, along with a rotating group of family and friends who came to meet him, pray with us, and bring us love and encouragement.

Throughout this time, that song from my labor playlist, “Sovereign Over Us”, kept ringing out in our hearts. We sang pieces of it over and over to ourselves and to Edison. The chorus says:

Your plans are still to prosper
You have not forgotten us
You’re with us in the fire and the flood
Faithful forever, perfect in love
You are sovereign over us

-“Sovereign Over Us”, Aaron Keyes, Bryan Brown, Jack Mooring, 2014

We were held steadfast by the knowledge that God’s sovereign wisdom had planned every moment of Edison’s life and that He had a plan, no matter what, to bring Himself glory and to work all things for our good.

Edison’s Story: Precious Days

The day came for Edison to be slowly weaned off of the cooling mat. I should pause and say that we had been told some preliminary results from tests that were checking on his brain function, and those tests were not promising. To be blunt, they showed very little brain activity.

Edison was also intubated. We could see on the monitors surrounding him that at times he was initiating breaths on his own, but he was relying heavily on the ventilator. He was unable to get rid of any sort of congestion, so he had to be regularly suctioned to clear his airway and lungs. He was getting all of his nutrition via IV (along with plenty of other medications for pain, to reduce seizures, etc).

At this point, Kyle had a pretty realistic outlook, whereas I was much more optimistic. There isn’t anything wrong with either perspective, it was just a natural function of personality. I had a great amount of hope that once Edison was warmed up, his body would kick into gear and his brain would start showing much more activity.

hand on Edison's leg

The process of warming up Edison’s body took the greater part of a day, and we stayed with him the whole time. It was amazing to get to touch him and feel his skin radiating warmth. However, there were no perceptible changes to Edison’s behavior.

He remained still, almost limp except for occasional small movements. He was silent. There was some evidence of internal body systems working in the form of wet and slightly dirty diapers (I have never been so happy to change diapers!) but nothing like the miracle I had been hoping and praying for. But still we prayed. I still pumped around the clock, hoping that one day he would need all colostrum and milk I was stocking up.

mama holding Edison

When Edison was 5 days old, I finally got to hold him for the first time. It was such a surprise, too! It was early evening, and the sweet NICU nurse was almost nonchalant when she asked me “would you like to hold him?” Of course I was completely thrilled at the chance!

Getting him into my arms was an intricate dance that involved at least three additional people to move him, secure his vent, and bring over his IV pole. The first time they laid him in my arms, it was actually a heavy bundle of both baby and his little “nest” of folded blankets.

The weight of his body in my arms was glorious. As soon as he was settled, I had the feeling that I had been looking forward to my whole pregnancy: “I did it! He’s here!”

mama holding Edison

The next day, not only did I get to hold him, but we got to do “kangaroo care” or skin-to-skin. I could have stayed that way forever if it had been possible, with him snugly placed inside my shirt, his fluffy hair rubbing softly against my chin.

Between sheer exhaustion and soaring oxytocin from finally cuddling my baby, it was everything I could do to stay awake as he lay on my chest. In fact, I’m pretty sure Kyle had to wake me up a few times.

It was just so perfect to finally have him where he had belonged all along. It was amazing to notice how his heart rate and breathing responded to being placed on me, too. Even though he couldn’t open his eyes to see me, it was obvious that he knew he was with his mama.

Edison with mama

Another exciting development was that Edison began receiving tiny amounts of my milk through a feeding tube. It was very minimal – about a teaspoon every few hours – and he couldn’t digest even that much, but it made me so happy to know that he was getting the chance to try.

Edison’s Story: The Prognosis

During these days, Kyle and I continued to receive various pieces of news regarding the doctors’ assessment of Edison’s condition. He was seen by neonatologists, neurologists, pediatricians, and probably other specialists too.

We were told that the things they were able to assess so far were, again, not promising. I remember one very kind and gentle doctor explaining that Edison almost certainly would never possess many of the qualities that we often think of making a person who they are – their personality, expressions, opinions, abilities. Kyle and I both cried hard tears after that talk, surrounded by our family in the waiting room.

The last big test we were waiting on was an MRI of his brain. That would give us definitive imaging of how much of his brain was no longer functioning.

Like most things in the hospital, it took longer than expected for him to be able to go for the MRI, and for the results to get back to us. Finally, we sat down with another doctor and he showed us Edison’s MRI images.

There was significant, irreparable damage to the vast majority of his brain. When the brain is starved of oxygen, brain cells die very quickly. And unlike most other parts of the body, once brain cells are dead, they cannot be regenerated. The parts of Edison’s brain that were still functioning were mostly in his brain stem, regulating the very most basic functions of life – breathing, heartbeat, digestion. Even that, though, was not without damage.

Edison's story

The options that were presented to us at this point were twofold. We could either attempt multiple surgeries (to help with his ability to breathe and ingest food) with no guarantee of success and a high likelihood that he wouldn’t be able to survive the surgery process, or we could choose to remove his ventilator and see how he would do on his own. To receive those two options was devastating, to say the least. We were given plenty of time to make our decision over the next few days.

Edison’s Story: The Decision for Healing

father with older son and Edison before infant loss

Up to this point, Edison was in his little open incubator-type warmer in a larger NICU room with several other babies around us. We could pull curtains for privacy, but it was a large space with about 10-12 other spaces for babies in the room.

The nurses were incredibly kind and offered to move him into one of the very few private rooms that were available within the NICU. So we moved into a new pod and into a room with a door, which was a special luxury.

mommy cuddling baby Edison before infant loss

Kyle and I tearfully and prayerfully talked through what our choice would be for Edison’s care. As we talked, it was evident to us that if we chose to pursue surgical intervention, it would be more for us than for Edison.

That is, it would be an effort to keep him here for our sakes and not necessarily what would be in his best interest. So, we made the absolutely heartbreaking decision to have his ventilator removed when we determined it was the right time.

We shared our decision with Edison’s care team in an emotional meeting, during which Kyle explained that we were motivated by the hope of the gospel. Because Jesus had died for our sins, redeeming us from the penalty of death that we deserved, we had full assurance that we would be joining Edison in heaven one day. We knew that the most merciful thing for Edison now would be to allow him to be fully healed, mind and body, in the presence of Jesus forever.

family looking at baby; infant loss; edison's story

Edison’s Story: Gifted Days

mother holding son. Infant loss- Edison's story

Knowing that Edison’s days were very limited, Kyle and I spent as many hours as we could holding him, singing to him, reading to him, and simply sitting with him. Our immediate family members all got the chance to meet him and hold him.

We worked with some of the hospice team members to make special memorabilia pieces with his hand and footprints. We consulted with the child-life specialists about how to explain what was happening to Quentin.

I asked the lactation consultants about continuing to pump breastmilk in order to donate it to babies in need, and they provided me with encouragement and resources. Mostly, though, we were just there, enjoying Edison for all he was.

father holding his infant son and singing to Edison

The day before we were going to have Edison’s vent removed, Kyle and I chose to have no extra visitors and just spend the day with our son.

The hospice team visited to talk us through some different scenarios for the next day, and to help us make some if/then decisions so that our wishes would be clear. We spent that night in his room as well, sleeping in recliners in his little NICU room. It was the only night we got to spend with him since his birth, which made it all the more special.

God gave us many precious gifts, including a very real sense of the “peace that passes understanding” that is spoken of in Philippians 4. He also allowed Kyle and I to agree on every single detail of Edison’s care without ever having to fight about choices.

There was no contention between us, and we were able to focus all our emotional energy toward Edison and toward holding each other together. Again, the lyrics rang out from “Sovereign Over Us”:

Even what the enemy means for evil
You work it for our good
You work it for our good and for Your glory
Even in the valley You are faithful
You’re working for our good
You’re working for our good and for Your glory
You are sovereign over us

-“Sovereign Over Us”, Aaron Keyes, Bryan Brown, Jack Mooring, 2014

Edison’s Story: Glory Day

Edison's story; baby's sweet face

On the morning of May 2nd, while I held him, our team of nurses and technicians came in and helped take out Edison’s vent. He was 13 days old, and it was the first time we got to gaze into his sweet little face and truly see each feature.

I had asked a doctor several days earlier what color his eyes were, and they had told me they were blue. I peeked myself now, into those unseeing blue eyes.

Now that Edison was removed from most of the tubes and wires that previously had made moving him so difficult, Kyle and I were able to pass him back and forth all day long. He was in our arms almost the entire day.

As we had been warned  might happen, there were several times that we thought he was dying – he would stop breathing for a time and turn a dusky gray, but then his chest would heave and he would take a massive, crackling breath and continue breathing.

Father kisses Edison

As evening approached and he continued to breathe on his own, the nurses asked if we would like to move to one of the few “rooming-in” rooms that they had, with a bed and bathroom inside the room.

That would allow us to stay with him every second, not having to leave Edison to sleep or even walk down the hall to the bathroom. After we got settled in, I held him for a while, then passed him to Kyle so that I could lay down for a quick rest. However, almost as soon as I began to lay down, Edison’s breathing became even more labored. It was about 12 hours since his vent had been removed.

Mother adores Edison

Kyle held him, and I knelt down beside them, rubbing Edison’s sweet head. At that point, we were as ready as we could possibly be. We knew that it was time for him to be completely healed.

The overwhelming feeling in that small room was a heavy holiness. It was as if the veil that separates heaven and earth was indescribably thin, as Edison’s spirit was freed from his broken body to experience true and full life.

When he stopped breathing for the final time, it was abundantly clear that he had transitioned not from life to death, but from death to life.

After a moment, we alerted the nursing team to Edison’s passing, and a doctor was brought in to confirm the time of death. We then called our family members who were still in town, and they came to the hospital to say their final see-you-laters to Edison. Quentin came with them, and we explained to him that though Edison’s body was still here, his spirit was now with Jesus.

“When he stopped breathing for the final time, it was abundantly clear that he had transitioned not from life to death, but from death to life.”

After holding his body for as long as we desired, we allowed him to be taken, and we left the hospital to try to sleep. Mercifully, exhaustion took over and Kyle and I were able to sleep that night.

In the morning, we made one more trip to the hospital to collect all the milk that I had pumped that had been stored in the NICU freezers. We were given a beautiful box containing a precious mold of Edison’s foot and handprints. And then, we drove home. Without our baby.

It was a mostly silent drive, listening again to my labor playlist. At that moment, I realized how many of the songs I had chosen to bring me comfort in labor were bringing us comfort in our first moments without Edison with us. We sobbed together, and we sang, and we worshiped the God who gives and takes away.

There is strength within the sorrow
There is beauty in our tears
And You meet us in our mourning
With a love that casts out fear
You are working in our waiting
Sanctifying us
When beyond our understanding
You’re teaching us to trust

Your plans are still to prosper
You have not forgotten us
You’re with us in the fire and the flood
Faithful forever, perfect in love
You are sovereign over us

-“Sovereign Over Us“, Aaron Keyes, Bryan Brown, Jack Mooring, 2014

Edison’s Story: Just Begun

There have been countless emotions in these few years since Edison’s life and death. There have been times to be miserable, times to be angry, times to be confused and despondent. But there have also been times to rejoice, times to be thankful, times to give God glory for how He has chosen to write this story.

While Edison was alive, we prayed faithfully that he would be healed and grow up into a mighty man of God, sharing the story of how God did the impossible in his life. Edison was indeed healed, but not in the way that we had hoped.

However, he was healed completely, and his story on earth is far from being over. Even though Edison was only given 13 days on earth, he has been able to draw many people into a deeper relationship with God, a more robust faith, and better understanding of God’s faithfulness in every circumstance.

Edison's sweet head

Though I didn’t have an Easter morning baby, we still sang “Because He Lives” with Edison. I sang it while holding his quiet body skin to skin on my chest. We sang it at his funeral. And it remains our testimony of God’s goodness to this day.

Because Jesus lives, Edison lives.
Because Jesus lives, I know I will see my baby again.
And even in the midst of the darkest days and the deepest sorrows, it is truly as the song says: life is worth the living just because He lives.

Because He lives, I can face tomorrow
Because he lives, all fear is gone
Because I know He holds the future
And life is worth the living
Just because He lives

And then one day, I’ll cross the river
I’ll fight life’s final war with pain
And then, as death gives way to victory
I’ll see the lights of glory and I’ll know He reigns

Because He lives, I can face tomorrow
Because He lives, all fear is gone
Because I know He holds the future
And life is worth the living, just because He lives

-“Because He Lives” Gloria Gaither and William J. Gaither, 1999
Infant bereavement, Edison's story -hands and feet

Infant Loss: Resources

If you have experienced or are experiencing pregnancy or infant loss, these resources that may be helpful: 

Hope Mommies– Hope Mommies is a ministry that exists to bring the Hope of Christ to bereaved mothers and families experiencing infant loss. Resources include Hope Boxes for grieving mothers, internet-based community opportunities, Bible studies, books, and annual retreats.

Now I Lay Me Down to Sleep – This organization is a network of photographers who are available to provide professional photographs for those experiencing stillbirth and infant loss, free of charge. 

Still Birthday – This website provides helpful information for those facing pregnancy loss, including the ability to find a bereavement doula and ways to prepare for birth when a baby has passed away in the womb. 

Empty Cradle, Broken Heart – This book covers the wide spectrum of types of loss, with chapters on loss, grieving, celebrating significant dates, communicating with others, getting pregnant again, and many other helpful topics.

Aside from the moments captured on our iPhones, the photos in this blog are the work of 3 very gracious photographers who offered to take pictures of Edison. They are: Kerrisa Joelle Photography, Liz Cook Photography, and my sweet sister-in-law, Leah Furness. Kerrisa and Liz both serve the Central Virginia area as birth, family, and lifestyle photographers. 

Hope in Infant Loss: How to Help Others

Thank you, Becca, for sharing Edison’s Story.

Becca and I have done another post about how to help and respond to those who have experienced infant and pregnancy loss in the immediate aftermath. We will also be writing further posts about how to support families who have lost a baby as the months and years go by.

Every baby of yours is precious, Mama. If you need a lift today, put your email in the box below, and I would love to send you some printable Scripture affirmation cards to hang up as reminders of just how loved you and your babies are!

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Thank you for reading Edison’s story. <3

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25 thoughts on “Edison’s Story: Hope in the Midst of Infant Loss”

  1. Velshera Johnson

    Becca, what a beautiful story. You are an incredible woman and you and Kyle are an amazing couple. Thank you so much for allowing us into this most intimate look at Edison’s life. We love you all!

  2. Such a touching and heartbreaking story. I’m glad you choose to see it in a positive way. You will always have a sweet little angel looking over your sister.

  3. I cried as I read this post and my heart broke for this sweet family. The loss of a pregnancy or infant impacts so many people and it’s such a devastating loss. I pray for comfort and peace in the years to come as well, as a loss like this never truly goes away. Sending love and happiness for all ????

  4. So much heart and love here. I pray for your family and sending so much love. Thank you for sharing your story! This will make other moms not feel so alone.

  5. I’m so sorry for the pain and grief you have suffered, even while mixed with tremendous love and moments of joy. I’m sending warm thoughts to you and your family, and saying a prayer for Edison.

  6. Beautiful read. I am amazed at your strength in being able to relay such an incredibly raw and heartbreaking experience. Thank you for lovingly sharing your story to help others who have gone through the same thing.

  7. OMG This is so touching and scary. I could not imagine. 13 days of a blessing to get to hold him and see him with an angel that will be with you for life. Becca, you are one strong momma.

  8. Wow, thank you for this. I was debating telling my infant loss story on my blog but after reading this beautifully written story, I just might share mine as well. This was really, really heartfelt ❤️????????

  9. Thank you for sharing this heart wrenching story. Your faith has strengthened mine. Prayers for continued comfort and healing.

    1. I was not aware there was a cause-awareness ribbon for infant loss until I was contacted by a customer to create one for her. Her daughter lost her little one at eight days of age. I don’t know this person or her daughter, but I pray for them every night. I cannot imagine this unbearable pain.

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