My Son Died Of Encephalitis Just 14 Days After Being Born

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“My name is Brandy. I’m 31 years old and my baby died 1 year, 2 months, 22 days, 17 hours and 30 minutes ago.

My husband and I have been married for 12 years now and we have 2 sons. We have an almost 10-year-old (Wyatt) and a babe who will forever be 14 days old (Logan). Wyatt was born with a vascular ring, which required several weeks in the hospital and major surgery at 6 weeks of age.

We always wanted another child, but when Wyatt was diagnosed with Autism and then ADHD we decided it was best to focus our attention advocating for him.

In May of 2016, we had a pregnancy scare and it got us thinking we could totally handle another kid. Wyatt was no longer controlled by his diagnosis and he’d been begging for a sibling for years.

A month later I took the test and began the journey of morning sickness, exhaustion, fear, and love.

When our OB told us at 18 weeks that we were having a girl we felt as if our dreams had come true. God had gifted us a son who just needed a little extra time with his parents to grow into the best possible big brother. And now he was gifting us with a daughter (a girl we secretly were hoping for!) that would be adored by everyone, especially her big brother.

I remember the laughter that followed the doctor out of the room. He told us to not buy anything for the nursery until we had our anatomy scan at 20 weeks, but who really listens to their OB? As predicted, I went to the store and set up our nursery. It was beautiful.

An Unexpected Discovery

2 weeks later we went in for our official anatomy scan. The sonographer swept over the baby’s legs and immediately my heart dropped. There was an extra body part that wasn’t supposed to be there.

I immediately felt my skin begin to tingle; we were having a boy.

I struggled more than I had expected with this news. I had given identity to this little girl and the future we were going to have. I felt as if this little girl had died and this little boy was to blame. I felt this loathing feeling towards this imposter in my womb.

In hindsight, it seems rather silly. Consumed by this news I packed up the nursery and exchanged my golds and pinks for blues and grays.

When my OB called the following Monday, I chuckled as he began to talk about my anatomy scan. I thought it amusing that he’d call to apologize for telling us the wrong gender.

Until he wasn’t apologizing. My brain was lagging behind a few seconds and it took me a moment to catch up to what he said. There was something wrong with my son’s head. He kept talking and all I heard was encephalitis, specialist, and questions.

My whole body was shaking. I knew if I spoke anything other than ‘okay,’ I would totally lose it. I hung up the phone and hollered for Josh (my husband). In between sobs, I managed to tell him something was wrong with the baby. I curled up in a ball and sobbed for what seemed like hours.

After the initial shock wore off I spent hours researching this encephalitis. But nothing made sense and I began to think this was all a mistake. A bad dream that would be rectified in the morning.

But when we went in the next day and my OB started talking, Logan’s diagnosis became clearer. I cried silent tears and tried to hold on to the little hope I had that my son would live a normal life.

The next 2 months consisted of numerous appointments with various specialists. They took an amniocentesis and blood work for genetic testing. When the amnio came back negative, our hope grew. Perhaps this was all a mistake, surely the next ultrasound will show improvement.

But each ultrasound continued to show the same thing: an encephalocele that was growing as quickly as Logan. When the bloodwork came back and showed that Wyatt and Logan had gotten a duplicate gene from me, I felt inadequate.

Encephalitis Diagnosis

I had given this unknown gene to both my children. Both of whom have difficulties and one who may not survive.

The roller coaster of specialists and their opinions was exhausting. We began with, ‘The baby won’t make it through the birth canal alive and it isn’t recommended that you have a C-Section since it’s major surgery and the prognosis of the baby’s survival was very slim.’

We were then sent to specialists in a nearby big city and they did an MRI and for the remainder of my pregnancy several 3-hour ultrasounds. Their news wasn’t any more comforting than the specialists back home.

A few days before Christmas we were to meet with the team of specialists to go over the MRI. The closer we got to that date the harder it was to keep the ‘I’m okay’ face. I had this overwhelming sense to have a gut-wrenching cry; a breakdown that I won’t be able to come back from.

They told us the parts of the brain for basic functioning were inside the sac protruding out the base of his skull. Several surgeries in his first year of life was the only way he’d live, and even that prognosis was very low.

If — and I say if because nobody fully knows what lies ahead of us — If Logan did survive birth and surgery, his basic function would be gone. They didn’t believe he would eat, see, hear, swallow, talk, etc. We left the hospital confused and defeated.

We began to ponder quantity versus quality.

Was it fair to put Logan through so many procedures to prolong a life that was not going to thrive? Or perhaps was it best to choose the quality of life over quantity? And sacrifice the amount of time we could have with Logan and cling to the quality time we could have.

As we began to process what that statement ‘quantity versus quality’ meant to our family, we started to shape Logan’s future. And with our decision made, I decided it was time to tear down the nursery.

I had no idea how incredibly hard it would be to return Logan’s crib. I took it apart with no problems and loaded the car up with all his stuff to be returned. My first stop was the crib; the cashier asked me what was wrong with it.

After responding with ‘I no longer need it’ I broke down crying. Obviously still very pregnant she knew something was wrong and proceeded to ask lots of questions about my baby. By the time I left customer service, there was a crowd of people behind me staring at my meltdown.

Preparing To Say Goodbye

With just a little over a month left in my pregnancy, I began to prepare to say hello and goodbye to my boy. I wanted desperately to enjoy what I had left of my pregnancy. Between all the doctors we were told Logan would live anywhere from a couple hours to a couple days at most.

With such little time to spend with my child, I wanted to make as many memories as I could. To my husband’s dismay, I proceeded with maternity photos. It started out as an emotional day. I had put so much pressure on myself to make this photo shoot perfect for Logan.

I was stressed, anxious, angry, self-conscious, and just beating myself up. Josh was crying as we walked out the door. I had expected we would be emotional during the shoot and I was okay with that because it would forever show the love we have for Logan and what we were going through.

But instead, it was a happy day. For just a few hours we forgot that Logan was dying.

January 13, 2017, we scheduled my C-section for March 3rd. The date was a difficult one to choose. Delivering at 37 weeks would have been the same week as my birthday. Delivering at 39 weeks would be our wedding anniversary. So 38 weeks won.

We chose a photographer to document every moment possible with Logan. Looking back now, this was one of the best decisions we ever made. Tiffany (T.Marie Photography) gave us an amazing gift I can never repay.

I won’t see Logan every day of his life, instead, every day of my life I see his life in a book.

We began making plans for his arrival. The C-section was scheduled, and the birth plan was made. We wanted Logan to make his own path. We chose not to proceed with surgery unless Logan showed signs at birth conducive to quality life.

Otherwise, we would continue with palliative care and pour a lifetime of love on him into whatever time we got.

Once the details were made, we told Wyatt that Logan would not be coming home. We explained to him the condition of Logan’s brain. He handled it the best way I know an 8-year-old could.

We would try to answer his questions the best we could. And we made a point to show him our grief. We wanted him to know that it was okay if mommy and daddy cried. Being sad is healthy and normal. And people deal with it in different ways.

Mom preparing for c-section embraces her son with husband behind her
Courtesy of T.Marie Photography

Logan’s Birth

February 17, 2017, I was admitted to the hospital with contractions. I was so scared that I would deliver Logan that night. I remember being in a panic because I didn’t have anything. As much as I had prepared for his delivery, nothing was ready.

The dogs were at home alone. All of Logan’s things were at the house. Wyatt was with friends and Josh was rushing to the hospital from work. It was chaotic and not how I planned his arrival.

Thankfully the contractions became unorganized and they sent me home. The following day my OB informed me that he almost delivered me that night, which scared me even more.

A couple days later I sat in Logan’s room typing a blog about my journey thus far. Instead of being surrounded by the sweet nursery things I once had, I was surrounded by things I’d bought for his funeral.

I’m excited like any expectant mother would be, but as the days get closer the anxiety is increasing. Plagued by the thought that I ultimately have to watch him die and give him to the funeral home to never see him again.

Delivery day arrived and tensions were high. We were surrounded by friends and family. Logan whimpered when pulled from my womb. As they carried him away, my husband let go of my hand and followed. I could vaguely understand what the doctor was saying as he stitched me back together.

But what pounded in my ears was the silence I heard from my son. I dry heaved tears of sorrow, positive that Logan was not going to make it out of the OR and meet his brother. Terrified this was goodbye and I wasn’t ready.

They brought him over to me, he was purply/blue. His eyes swollen shut, curled into a ball, and making funny noises. They placed him on my chest so that we could bond before saying goodbye.

After a few minutes his color starting turning pink, his breathing changed and his whimpering became stronger and louder.

Mom embraces newborn son after having a c-section delivery
Courtesy of T.Marie Photography
Mom does skin to skin with her newborn son after delivery
Courtesy of T.Marie Photography

Soaking In Every Moment

I’ll be quite honest, I was on round-the-clock pain meds and I don’t remember much from the hospital. Most of what I’m writing next comes from my blog. Entries that I made while Logan was home. Before the pain meds, sleep deprivation and emotional trauma erased my memory.

The first night was rough. We had to continually suction out his mouth. He started having seizures. We were going off the doctor’s initial timeline of a few hours – a couple days.

So every minute, literally every minute, we waited for Logan to die. What should have been a normal baby’s behavior looked like death in our eyes. We were living on the edge.

I spent several hours that first night bearing my soul and crying. Trying to be brave for Logan. Telling him that we would be okay and that he could go home to Jesus.

Newborn wrapped in blue blanket sleeping
Courtesy of T.Marie Photography
Big brother embraces his baby brother wrapped in blue blanket and hat
Courtesy of T.Marie Photography

The next day we tried to feed him. He couldn’t suck and didn’t appear to swallow. The doctor didn’t recommend a feeding tube for fear he would aspirate. After four days in the hospital we got to go home.

Family surrounds newborn baby boy in hospital bed while they soak up every moment with him
Courtesy of T.Marie Photography

Logan’s taking Valium for his seizures and every time I have to give him his dose I have an anxiety attack from fear that this dose will be the one to finish easing his breathing and he’ll be gone.

I look at this child and I’m watching him fade away.

He’s not vivacious like he was just a few days ago. He’s not chubby anymore. I feel his ribs and spine when I hold him. Just looking at him when I change his diapers make me weep. He’s resumed the fetal position. He spends 95% of his time on my chest, skin to skin.

It’s the only solace I can give him. I tell him all the time how much I love him and how perfect he is.

Emotional new mother embraces her dying son
Courtesy of T.Marie Photography
Newborn baby boy in fetal position with beanie on
Courtesy of T.Marie Photography

Day 11 – Logan has blood on his lips. Hospice told us it is an internal bleed and there is nothing they can do, it’s part of the dying process.

They told us to increase his Valium. We also started giving him Morphine to keep him comfortable. His breathing is normal paced but there is a rubbing sound when he breathes.

The hospice nurse believes his lungs are shutting down and he is starting to mottle around his face. While part of me is relieved it’s almost over because I’m ready for him to be in Heaven, the other part of me is screaming in agony.

So many times over the past few days I’ve gone through the emotions of his passing away only to be surprised with another day. I’m so emotionally and physically spent.

Grieving Logan

The day Logan died we sent Wyatt to school. He had missed so much since Logan was born. We felt he needed some normalcy and we assured him we would get him if anything happened.

Logan and I were snuggling on the couch drinking coffee and reading books, just like we had done for the past several days. Josh had just walked down the hall to get into the shower. Logan stopped breathing for a few seconds and then started back up. Something he’d been doing for the past day, but there was something different this time.

Something in my gut told me, this is it. I yelled for Josh to come back. We sat there holding him, loving him, speaking comfort and courage into our brave boy. His pausing breaths followed by cooing.

As Logan took his final breath, we felt for his heartbeat. When we could no longer feel his heart, we both looked at each other and said, ‘that’s it.’ Relief washed over me for it was finally over. But it was quickly replaced with anguish and confusion.

I handed Logan to Josh after he called hospice. I called my sister to get Wyatt from school. Josh sat sobbing on the couch as I walked through the house with no purpose and no place to go. Back and forth I walked not knowing what I was trying to do.

When Wyatt got home, we handed Logan to him and I watched him slowly trace his finger over Logan’s face. Examining every detail he could about his baby brother.

Mom lets her son hold newborn to say goodbye to him
Courtesy of T.Marie Photography
Big brother holds his deceased baby brother for the last time
Courtesy of T.Marie Photography

I gave Logan a bath, lotioned his stiff body and dressed him. Wyatt crawled into my bed and I placed Logan in his arms. And for the first time in several days, I bathed.

I held him in my arms as we drove to the funeral home, half expecting to be pulled over because my baby wasn’t in a car seat. I replayed the scene where I just snapped on the officer for trying to take my dead baby.

Once at the funeral home, we went over details for the service, thankful that I had planned the majority of Logan’s funeral while I was still pregnant.

Mom bathes her son as she gets him ready to bury
Courtesy of T.Marie Photography

His viewing was a proud day for me. I’m sure that seems odd, but it was my day to share my boy. Nobody really got to meet Logan while he was alive. We secluded ourselves in the house.

But this day, this day, Logan was bathed and dressed. I was bathed and dressed. He was wrapped in cloth and I walked proudly around with him in my arms showing him to all my friends. I swayed to the music playing and patted him on his bottom as if he needed soothing.

I was touched at his funeral by the show of people who supported us and those whose lives had been touched by Logan. We sat in the front row with my husband holding Logan and my arms wrapped around my weeping Wyatt. His heart broken.

We played a slideshow of all the photos we had taken during my pregnancy and in the 14 days Logan was here. We had tables setup with all of Logan’s things and his favorite books that we read while home.

We each picked a onesie that was used for people to sign as a means of a guestbook. These onesies now hang in shadow boxes in our living room.

Son embraces dad as they sit in the funeral home
Courtesy of T.Marie Photography

Logan was cremated, and we have a Build-A-Bear with his heartbeat. We call him Logan Bear. For the first year after Logan died, he wore the outfit Logan was supposed to be buried in.

Celebrating His Life

On Logan’s 1st birthday we held a birthday party. On one wall, still images of Logan’s life played on a loop.

We had different stations throughout the party; ‘A Letter Station’- where family and friends could write a letter to us or Logan, ‘Rock Painting’- guests were encouraged to paint a rock in varying forms of blue that we later placed around our Lilac bush we planted for Logan on Mother’s Day, and ‘A Photo Booth’- Where Logan bear (Wearing the lumberjack theme outfit) was sitting in a highchair for guests to pose with.

We had a chili feed and tons of sweets. Logan’s photo albums and belongings laid out on a table for guests to look through. We sang Happy Birthday to Logan bear and enjoyed cake. At the end, we played Logan’s birth video and went outside to release red and black balloons.

Since Logan has died, we each travel a different grief journey. In the beginning, I was the pillar for my husband and son to lean on. Now they have become my pillars.

Family of three together as they gather for sons funeral
Courtesy of T.Marie Photography

I created a Foundation in Logan’s memory (Love From Logan). Our purpose is to help families plan memorial services and provide the decorations free of cost.

To give families the permission (they most certainly don’t have to ask for, but desperately feel the need to) to honor their child in any way they so choose.

I don’t know what each year will bring for my family. But I know the love we have for Logan never fades. He is a constant topic in our household. His name is not sacred but loved and used often.

Mom and dad smile in hospital bed as she holds her newborn son
Courtesy of T.Marie Photography

This story was submitted to Love What Matters by Brandy Cook, 31, of Kansas. Join the Love What Matters family and subscribe to our newsletter.

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