Losing a Child....Do you ever find healing?

Alexis Donielle Dover

I was recently asked to share my story about our own loss in 1986.  In preparing my written version, it dawned on me that this blog would be a perfect place to put it out there.  I am amazed at how fast time has passed since experiencing this gut wrenching event. I also marvel how God has put back together all the pieces.  I can honestly say that His grace is enough, His mercies are new each morning, and He brings beauty out of the ashes.

My story began over 31 years ago!

We gave birth to our first child, a girl, on February 8, 1986.  She was declared healthy, passing all hospital tests.  We stayed the usual couple of days and were sent home.

I noticed about 3 weeks later, while trying to feed her, that she was not eating particularly well one afternoon. It was a cold, dreary Sunday and I remember trying to feed her and she would continually  fall asleep.  My husband was in the other room watching sports on TV.  I handed her to him for a bit and he said she felt warm.  We took her temp, and yes, she was running a slight fever.  We put her down to sleep. When she woke up she still wasn’t eating and her temperature had risen since before her nap.

I went to change her diaper and noticed she was getting a lethargic way about her.  Almost moaning a bit.   Not knowing what to do, we decided to take her to a walk-in clinic nearby.  When they took us back to the examining room, one of the first things they did was pull down her diaper to listen to her abdominal organs. Doing so, she was “mottling” in her entire diaper area. Immediately they brought oxygen to the room and began administering this to her.  I had never seen an oxygen mask that small!

At the time, we did not realize that the staff up front had already been alerted to call 911.  Within a few minutes we were bundling her up and they were sending us on our way to a hospital nearby.  The doctors at the clinic said she was going to need more oxygen and tests to see what was causing the lack of circulation.

I rode in the ambulance and my husband followed in our car.  We were immediately wheeled into an examining room and after answering lots of questions for which I am sure I had no intelligent answer, they asked us to wait outside so they could examine her further.   I don’t really remember what tests they did, or what they did for her.  I do remember that at the end of it they told us two things:

1.       They would have to transfer her to the Children’s Hospital as their location did not have a Neonatal Intensive Care Unit (NICU).

2.       Her heart was not “squeezing’ as hard as it should with each beat.  She would remain on oxygen while being transported to the next location.  (My wild imagination was already thinking about heart transplants!)

Imagine our surprise when they said they would be using flight services to take her to the Children’s Hospital.  My husband asked if I could fly with her and they said yes, if they do not send additional medical staff with them.  I was preparing to fly and was then told they were going to send an ER nurse with her instead. 

My husband and I must have driven like madmen through the streets of Denver that evening.  I don’t remember parking, much less going inside. When we arrived, the downstairs check-in desk sent us immediately upstairs to some floor that held the NICU.  A series of questions, paperwork and conversations ensued. 

By the grace of God, the doctor on call that evening had spent part of her training at Children’s Hospital in Philadelphia working with infants who had contracted Group B Strep.  She tried to explain what it was, and how, based on our daughter’s symptoms, she was led her to think she was under the effects of this bacterial infection.  She had the staff take the necessary cultures, explaining that it would be days before the results came in, but that she could initiate treatment immediately.  I do remember thinking that the only “strep” I knew was strep throat!  We had no idea, nor “google” to figure this one out.

Over the next couple of days, we were settling in, meeting with a constant round of specialists. Family flew in to be with us.  Still waiting on the Group B diagnosis.  She was under a treatment of antibiotics, oxygen and being heavily sedated.  Intravenous lines everywhere! We couldn’t hold her, only touch her.  That was the hardest part of the wait.  

One of the treatment attempts was to do a blood exchange. Not to be confused with a blood transfusion. This process was a drop by drop exchange of new blood with her current blood. Her entire body was replaced with new, donated blood. We had never even known you could do this.  I remember watching from the NICU windows as the doctor from Sunday night (praise God), stood at her side and slowly administered the exchange.  It seemed like forever, but the mission was accomplished. We were told that maybe doing so would completely flush out the infection.  I never found out what the results were.  If they told us, we don’t remember.  Even with the blood exchange, there existed the fear of spinal meningitis. 

By Thursday morning, after the doctors made rounds during a shift change, they came to us upon our arrival at the hospital.  We were told that when they did a pupil check, it was evident that our daughter now had the signs of spinal meningitis.  They asked for permission to perform a spinal tap, of which we gave them.  We watched and waited with our little girl in that NICU room.  She had her own 1:1 nurse on duty at all times.  I must say at this point that a NICU is the most amazing place in a hospital. To this day, no other form of medical treatment compares.

When it drew closer to the noon hour, I remember a nurse or the doctor telling us that they wanted to meet with the Ethics Committee to discuss our daughter’s case.  Being new parents, and naïve, we really had no idea where this was leading.  A bit later we were called to a meeting room on another floor.  I remember the set up being a boardroom table with myself, my husband and my mom on one side, and our doctor (the one from Sunday night) on the other with fellow medical staff.  Our doctor had a box of tissues in front of her, with silent tears streaming down her face.  I do remember someone on staff pushing a box of tissues over to our side of the table.

It was during this meeting that they staff slowly explained what was happening.  It seems that the meningitis was ravaging her body.  We were told that her prognosis at best, would be a daughter who would be in a vegetative state.  What came to mind immediately was the Kathleen Quinlan case where a young woman was left in this state for over 10 years. She had finally passed away in 1985.  That was what crossed our minds as we discussed this later.

After they explained her current condition, and what the future would entail, they presented the findings of the Ethics Committee. They offered the option of us removing her from life support to see if she could breathe on her own. They told us there was nothing they could do as the meningitis was so wide spread they could never contain it.

I don’t remember many questions asked by us, but I do know we agreed to their recommendations.  We were told that they would get things ready downstairs in the NICU and call us in.  How we made it to the NICU floor once again and what we did while they were getting things ready, I have no idea. It all became a blur.

Once they called us in, I did notice they had drawn the curtains closed around the window of our daughter’s room.  They explained what they were going to do. The nurse on staff was so tender and so kind.  She brought in a rocking chair, and a couple of extra chairs for the three of us to spend the time with her. They asked us if we wanted a chaplain and we said yes,   He came and administered final prayers for her and for us.  

We settled in.  They disconnected everything but the life support connections.  IV’s were gone, monitors, etc.  Only one monitor remained which I realize now was the one monitoring her heartbeat.  They wrapped her in the softest blanket I have ever felt.  Saying our goodbyes was hard.  We were such new parents and we had no idea!  My mom was overcome with tears of sadness.  She “knew” as she had already parented two children.  Once we said our goodbyes, they told us they were going to turn off the life supports.  It was within minutes that she slipped away.  So quietly. I never knew when it happened except that the beep of the monitor had stopped.  I remember the nurse telling another nurse the time of passing.  The date was Thursday, March 6, 1986. 

We were able to hold her a bit more, and eventually turned her over to the nurse.  We walked out, signed papers, and gave information needed.  Within minutes of her passing we were having to make arrangements.  They showed us to a family room where the lights were low, and the room was quiet.  We cried.  We had the chaplain once again join us.  Prayed with us.  Somewhere in all of this, we made contact with the funeral home and they told us they would take care of it all.

Before we left, we grabbed her baby bag we had left in the corner of her room.  The room was already made up for the next infant. That was the saddest scene most of all. 

During my six week postpartum check-up, my doctor ran blood work on me.  I was the carrier and it was determined that she contracted the strep going through the birth canal.  It was late onset Group B Streptococcus. 

With each child following (we had 4 more), I was given antibiotics towards the end of my pregnancy and through labor.  I was always declared “high risk” during my deliveries, hence why they brought a pediatrician into the delivery room immediately upon the birth of each of our children.   No other child contracted the virus.  Of that we are thankful.  I found the Group B strep Association through someone who had known about it.  A few people called me to share my story.  Once the internet came about, I joined the Facebook group and as they say, the rest is history.  I tell pregnant moms to get tested.  Our own daughter, who gave birth to our first grandchild in 2015, was immediately tested (negative) and given antibiotics during labor. 

The blessings over 31 years later:

1. My family is closer than ever.  We value life and our children are our most precious gift from God.
2. More and more physicians test for and pre-treat for Group B.
3. The awareness out there and a way to disseminate information, quickly! Thank you social media.
4. Being able to share my story.  And the opportunities to minister to families who have experienced infant loss.

And now, where does that leave us?  Loving life.  Enjoying our children, and now our grandson.  

The memories are always there for me.  I have a box on the top shelf of my closet that holds cards, letters, and notes. The small cards that came with the flowers for the funeral are also in there. These contain words of encouragement. Some came from strangers, not known to me, but friends of extended family. They just wanted to say they cared.

Someone recently asked me if it ever gets easier, and do I ever "forget" the one I lost so long ago.  My answer was, yes, it does get easier as "life" just continues to go on.  Will I ever forget?  No way.  It's a personal memory.  One that only a momma holds close to her heart.  My children who came after only know her through photos.  It's awkward to talk about in social settings.  People ask how many children we have.  We always answer four, and not the correct answer of five.  Too weird if we do tell them!

So, each year around her birthday and the day she died, I think long on her short life.  How I wish she were alive to see her siblings behind her.  Private thoughts.  Wishes for her to be here.  Knowing that one day I will see her again when I get to heaven.  I hope and I wait.  I thank God for the blessing of having given birth to her, even for such a short amount of time.  

I don't know why God chose to take her from us at just one month of age.  However, what I do know is that He works all things out for good.  And I will cling to that promise.

I see so many people on the news who have lost children. Some as young as our daughter and so many others at much older ages.  Is it easier one age or another?  I don't think so.  On the one hand, you have many more memories to hold dear, but for the ones who died in infancy, you mourn the "lost" years. Those you never got to experience.

The lesson from this story?  Love hard.  Hold close those that you care about.  Show them and tell them how much they mean to you.  We never know how long we have on this earth.  Finally, find a way to bring beauty from the tough times.  Share the stories with others as encouragement.  In the storytelling, we find comfort for our own loss.

3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.                                                           2 Corinthians 1:3-4

Note:  If you or someone you know has lost a child, I would love to hear the story.  I want to pray for you and offer whatever comfort or encouragement we ourselves have received these last 31 years.