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Marching for SUDC Awareness Month

Governor Burgum’s office sent us our annual signed copy of the proclamation stating that March is Sudden Unexplained Death of a Child (SUDC) Awareness Month. We were honored, as we are each year, to be chosen as the representatives for the state of North Dakota, but we also realize that we belong to a very small club and therefore have never met or even heard of anyone else in ND that could take our place. Thankfully, SUDC is very rare – although inherently hard to quantify due to the variety of circumstances around each death – so we were just one of the unlucky ones.

*Disclaimer: This is a very sad story. If you already know what happened to us or have a small toddler in your life, I would suggest you skip past the italicized words and just read the positive ending. If you plan to power through, just make sure you have some tissues handy and if you make it to the end, you will get a special virtual hug from our little Abby in the flesh!

Thursday, April 19, 2007 started out like any typical day. I got up, showered, dressed for work and ate breakfast and then woke up the girls to bring them to day care. My oldest was 4 ½ years old and she got dressed on her own. Then we both went into Abby’s room to wake her up – something we looked forward to everyday.

Abby, our 19-month old, was already awake and standing in her crib with her blanket in one hand and her nuke in her mouth. She had the rosiest little cheeks which were a stark contrast to her bleach-blonde hair and pale white skin. (In fact, she would later be lovingly nicknamed a little toe-head by her ICU nurses.)

I’ll never forget how she couldn’t wait to put on her little pink boots and soft pink coat and get out the door. She was so darn cute that morning that I asked her for a quick kiss before we left and she happily, and quickly, complied.

Dropping kids off at day care was a quick process, since other families were coming and going, but I always took the time to hug the girls before they took off down the hall to the toy room. This day was no exception.

What I didn’t expect was the phone call at work, right after Abby woke up from her nap. My precious day care lady was hysterical and saying that Abby had quit breathing and the ambulance was on the way. To this day, I am not sure what we said to each other. She gave me more details later, but at the moment, my body went into complete shock. Somehow, my inner/practical Girl Scout took over and suddenly, I found myself driving to my husband’s work-place, which was just two blocks down the road.

He still jumps when I suddenly show up at his office because on that day, I burst into the door and said we needed to get to the Emergency Room at the hospital as quickly as possible.

My husband drove us there and I remember hitting bumps really hard because he did not slow down for a second. (After that experience, I stopped being so judgmental when speeding cars go by. You never know what kind of tragedy they are driving toward.) In my head, I was still trying to make sense of things. Did I misunderstand my day care lady? Should I be preparing myself for the worst? Not possible.

We beat the ambulance to the hospital but not by much. The chaplain was waiting for us, though, so that was another clear indication that things were serious. I was still nowhere near ready to give up hope yet. Abby was completely normal, healthy and happy that morning! Doctors can fix almost anything, right?

My parents arrived and we all prayed and waited for the doctor to come in and tell us SOMETHING, for Heaven’s Sake!

Finally, my husband and I were summoned to Abby’s hospital room where there were nurses, doctors and equipment everywhere. Abby had tubes in her mouth and machines were helping her breathe. By some miracle, her heart was beating on its own!

For some reason, though, the doctors were not optimistic.

The problem was that Abby’s body – mainly her brain – went without oxygen for too long.

After talking to our day care lady and the paramedics on the scene, we calculated that she was not breathing for almost 45 minutes. So even though she was given chest compressions immediately and when the paramedics arrived about 10-15 minutes later, her heart was shocked with a defibrillator, it’s just not the same oxygen distribution that our hearts provide when they are beating on their own.

The next three days were another blur, mixed with fear and false hopes. Abby stayed in the ICU with 24-hour care and even showed signs of progress. Her kidneys, which we were told are usually a tell-tale sign, were functioning well. Even though she did not appear cognizant, she was responding to touch, like pulling away when you tried to hold her little arm. She even started breathing on her own so the nurses removed the breathing tube.

Therefore, on that Sunday afternoon, we sent our friends and family home and said that we were going to keep hoping for a happy ending, even though the doctor was very reserved and kept saying that Abby went too long without oxygen.

The dreaded CODE BLUE alarm went off very early on that Monday morning. By happenstance or just mother’s intuition, I was awake and walking toward her room to check on her at the same time. Hospital personnel were coming from every direction and I knew she was not going to make it.

The premonition was confirmed when the results of the brain scan came back, showing no neurological activity present. All hope was lost but after 4 days of crying and getting very little sleep, I had no energy left. My husband and my oldest daughter needed me and there were lots of decisions to be made, so a complete mental and emotional breakdown would have to wait. (Believe me, I had plenty of them when time allowed. My poor family, friends/co-workers had to endure a few of them with me.)

We decided to donate her organs and were thrilled later to find out that one of her kidneys had helped a young man get off of dialysis and a little baby boy lived a few months longer after getting some of her intestines. (And just like that, I was feeling sorry for that baby and his family. Such sad stories everywhere!)

Of course, we had the heart-breaking funeral with little Abigail Rose wearing the beautiful purple/flowery Easter dress that she had been running around in just 2 weeks earlier. (Shown in the picture with me above.) There was not a dry eye in the House.

A full autopsy was performed and when the results were finalized, my husband and I met with the coroner – a professor brought in from the University of North Dakota because the state needed some extra help with our case.

I guess I would describe her as speech-less. She had no real answers for us and I suppose her heart was breaking for us as well. But everyone who came into close contact with little miss Abigail Rose was immediately charmed and forever changed. (I even heard that a few of the people quit or changed their jobs after it happened. The whole thing was so hard on everyone.)

While we were in the hospital, Abby’s doctor, a renowned pediatric specialist, explained that the brain and the heart are like the ocean. There is still so little we know about them. While we think Abby quit breathing because her heart stopped, we don’t know if her brain sent the message or if it happened independently. In any case, he knew that our fear of death for our oldest daughter and even ourselves was now at a 10 so he scheduled ultrasounds and all kinds of other tests – looking for Long QT, etc – on all three of us. In the end, we found nothing.

A day or so after the funeral, I went back to work, which was a blessing. I loved my job and had amazing and supportive co-workers. The work kept my mind occupied.

When I went home, there were signs of Abby everywhere and I had all kinds of free time to grieve, since she didn’t need me to feed, clothe, change her diaper and watch out for her every second.

My nightly dreams were vivid and joyful, with Abby alive, happy, and giving me kisses before running off to her new day care, which looked exactly like heaven should look. We were sitting outside on a picnic table with bright light all around us.

It was the one time in my life when the true nightmare began each morning I woke up.

But somehow, time started to go by and I employed enough coping mechanisms that I could start to enjoy life once again. I called my oldest daughter my “kickstand” because she kept me

from falling over, and because she was about half of my height. I tried to be happy and focus on her when she was near. (But I’m sure I failed miserably sometimes and for that, I am so sorry. I could tell a whole other story on how Abby’s tragic death affected her big sister, but I am already taking up too much of your time.)

After learning that Abby’s death was probably going to remain a mystery and there was very little chance that it would repeat, my husband and I decided to try and get pregnant again, which worked almost immediately. Our new baby girl arrived about a year after Abby died.

We were overjoyed but soon discovered that we would re-live the nightmare each night that she slept and the fear of losing her would not subside until she started elementary school. (The risk of sudden unexplained death of children drastically goes down after age 4, which is when the heart and the brain have developed more fully.) Therefore, we had no trouble deciding to shut down the baby-making factory. Besides, three children were enough.

It’s been almost 14 years since Abby passed away, so now her story is much easier to tell and somewhat matter-of-fact rather than tragic and heart-breaking. (I wrote the last sentence BEFORE I wrote out the story above so now I need to add that writing out the details of the story was horrific and brought me right back to those deep, dark days in the hospital. There was a reason why I had not wanted to write that section. But verbally telling people that I had a third child who passed away for no apparent reason many years ago is much easier.)

I have to make a conscious decision every day to trust God and believe that I can make it through anything. It’s important that I try to enjoy life, too. Everything in my body tells me that she would want all of us to be happy. When we achieve that goal – most days – I have to believe that we are making her proud. Plus, it is so comforting to know that each day that goes by is bringing us one day closer to seeing her again. Yet, we cannot waste a single moment of those days since there are still many family and friends still here with us!

With all of that in mind, along with my own desires to get healthier and lose weight, I am even more motivated to keep on marching and continue to make change happen. I have to believe that Abby is looking down on me and glowing with pride because her momma did not let grief defeat her!

But I will not stop there! I want Abby to see me as strong, energetic, positive, driven and highly motivated to not only live my best life, but also do my best to make the entire world a better place. Each day I wake up is another opportunity to make a real difference!

Plus, you never know what new experience you might have.

I’ll never forget how excited Abby was to put her shoes on and run out the door on that tragic day. If only we all felt that way about life! Just the other morning, I saw 2 deer run across the road by my office. We have had unseasonably warm weather lately, so my black cock-a-poo and I have enjoyed a few walks and I have seen some of the brightest stars in the sky after dark. It’s a good thing I have my eyes open!

As I get closer to the 50-pound weight loss milestone, it’s so amazing to reflect on the last 14 years, or even the last 8 months, and think about what I have experienced and how it has molded me into a pretty bad-ass human being, if I say so myself.

I am excited to get up every day, to enjoy my breakfast before I head off to work or go to an exercise class. I CAN’T WAIT to see people and keep making progress on my goals and dreams. I am always keeping a watchful eye on my surroundings, too. I never know what might come across my path.

Now I see myself as one of the lucky ones who found out early that life is short and you CANNOT WASTE A SINGLE DAY because NONE of them is guaranteed. But I no longer live in fear, I just make sure to end each conversation with kind words before I head out on my next adventure.

The world is waiting for me!

As promised, here is your hug from little Abigail Rose:

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