You Look Fine From the Outside

By Crystal McCullough

You look fine from the outside

Breathing, opening and closing your eyes

Even giving away sly grins

What you can’t see is the twisted anatomy inside

The change of oxygen in your blood

How it affects your brain

But you look fine from the outside

Until your scar peeks through

A once perfect smooth chest

Now a rippled line with so much story to tell

Every minute that could be the last

Every day a new development good or bad

But you look fine from the outside

The struggle to find the right dose, treatment and coping mechanism

A mother’s instinct or blind faith in science

Denial of normalcy battles with reality

But you look fine from the outside

You teach to not judge or assume

You teach to love unconditionally

You teach to hold on to hope

You teach to love

Despite looking fine from the outside

But out of place on the inside

My name is Crystal McCullough, I live in Chesapeake, VA, with my husband, Mike, and I was born with a double aortic arch.

We have five children; two living, one in Heaven and two on the way. Aidan, my stepson, is 14. Miranda, my daughter, is 4 with a right aortic arch. I am carrying heart healthy twin boys and we have Logan, our son, who passed away Jan. 9, 2017 at four months old.

Logan was diagnosed in utero at 17 weeks with Tetralogy of Fallot with Severe Pulmonary Atresia. The rest of that pregnancy I felt disconnected at times. I was afraid, scared and wanted Logan to stay in my belly because that was where he was safe. But we advocated hard for him to get the best shot at life.

When he was born, I was not able to hold him. I did get to touch his sweet face before they took him to the Children�s Hospital of the King�s Daughters which was next door to where I delivered. He was pink and perfect.

Over six hours later, I held him for the first time. We were transferred to UVA at five days old and he had a cath lab at 10 days old which proved unsuccessful. We saw him briefly before they wheeled him into an over 10-hour heart surgery.

When they closed him, he crashed and they had to go back in, put him on bypass and place a Central Shunt instead (the BT Shunt kinked). He recovered well and we came home at 31 days. He was followed 1-2 times a week with doctors� appointments and daily monitoring. It was hectic but we made it work and loved every second that we had him.

Logan was so happy and his eyes would look into your soul. He wanted to be held all the time and sleep on our chests. He had the biggest smile and twinkle in his eyes.

Despite having awful reflux and getting fussy during those spells, he was always in good spirits. He got to play with his siblings, take a few local road trips and visit with many family and friends. We continued to advocate for him and loved him so deeply. We called him Lil’ Man and Logan Lion Heart. His heart journey was followed by hundreds of people and throughout everything he never had any complications or scares.

Logan was growing so well, practically caught up developmentally and we were just waiting for his open heart full repair surgery in February. �I always told him, �Don�t leave me.�

I would sing him the lullaby I made up for him. I would tell my husband that I was afraid of losing him, but we would remind each other to not regret one moment with him; that it would be worth it.

The morning of Jan. 9 haunts me. I went to lay down for a few hours since Logan was restless for several nights. I remember trying to fall asleep as I heard Logan cry harder than I had ever heard him before. I knew Daddy was giving him his Prilosec (for reflux) and it was never fun for anyone to give medications by syringe to a baby. I thought I should go help (you know how mommas get) but no because Daddy has got this and I need my rest. I heard Logan settle down and I drifted off to sleep.

Not long after, Daddy rushed into the bedroom, holding Logan out in his arms screaming to call 911. Logan was already gone, heart barely beating and he was hardly breathing. �The rest of the morning was incredibly traumatic.

First Responders and ER staff tried for hours to get Logan back. While we will never know what happened, his cardiologists are pretty sure that Logan’s heart went into an irregular rhythm and it caused a sudden cardiac arrest. It was too sudden, no warning, and there was nothing anyone could have done. It was rare but shunt babies always live on an edge.

I struggle with the guilt of thinking I could have prevented this or should have known something was really wrong. I struggle with PTSD of monitors beeping, sirens coming from the fire department, and it surfaces sometimes when I tell Logan�s story or others share theirs.

We have banked Logan�s DNA and also participated in various genetic studies in the hopes it can help others. Because we have no answer to why myself, my daughter and Logan were born with congenital heart defects.

We have so much love and are trying to find out where to filter that too. We know Logan will not hurt anymore and he is forever lodged in our hearts. I close my eyes and I can hear him talking to me.

Our family joined “clubs” we never wanted a part of � the heart warriors and heart angels. But without them, we would not be as strong as we are. We still advocate for Congenital Heart Defects.

We will always be #LoganStrong for our sweet Lil’ Man. He will forever roar like a Lion.