Killian the Warrior

Illness can be incredibly isolating. Even with immense support from family and friends, when a diagnosis or condition arises, reaching out to those who know from first hand experience how difficult it is, can provide critical comfort. We share stories so that others may know they are not alone.

Killian the Warrior is the first of a series of shared stories from Melissa Nail, who will be stopping by frequently with tales of  her son, Killian, and his progress. Melissa is a local guest blogger sharing her experiences as the mother of a child diagnosed with a Congenital Heart Defect. More of her family’s story can be found on her blog Heart on the Outside. If you would like to share your story please follow this link.

I like to think it was my waffling interest in Indie movies and British cinematography. I would always watch the credits roll by, fascinated by common names in other English-speaking countries and looking for inspiration. It’s possible that I’m trying to be high brow and my husband Justin and I had really just been throwing back some Irish Red, but about three before we decided to have kids, we fell in love with the name Killian. It would be the first name of our first son, paying homage to my Irish grandmother.

The first 20 weeks of my pregnancy were killer, and all I wanted was a chance to personalize the little human growing inside me. I wanted he or she to have a name, and then it would all feel real. Finally, sonogram day came and we…well, I can’t think of an appropriate euphemism right now for “we saw a penis” but that’s what happened Killian had a 3-D photograph and a name.

For those of you who don’t habla ancient Celtic languages, Killian is an Americanized spelling of the Irish name “Cillian”. Most sources say it’s derived from the word for “war” or “warrior”. We didn’t know it would be prophetic; we had no reason to think there was anything wrong with him.

When Killian was born, we were told right off the bat that he would not have long to live. Doctors had done all that they could do and our best option would be to hold him in our arms and say our goodbyes. If he could somehow make it to a bigger hospital, he might have a chance, but the medevac flight was almost a guaranteed death sentence and he would go alone in an incubator, with no mommy or daddy to see him off. Even if he did make it, doctors told us, there was a strong possibility that he would have serious defects and we needed to give thought to whether or not we could deal with his care for the rest of his life. We made it clear that we wanted to do all we could to save him, said our desperate prayers, and put him on a helicopter.

He lived up to his name. I got a phone call saying he had made it to the hospital alive and doctors needed parental consent to perform an emergency septostomy (a surgical creation of an opening in a septum). He was purple and grey, they told me, but he had held on. He fought through his first recovery and was given strength to survive until he was stabilized—my little warrior.

After that procedure he was officially diagnosed: Congenital Heart Disease, culminating in severe aortic stenosis, an enlarged left atrium, mitral stenosis, and mitral regurgitation bordering on severe. He has had one major corrective heart surgery at this point, and a tracheostomy.

All told, we spent four months with our life on pause, living with our son in the NICU as he went through several operations. Our story is a patchwork of what we absorb as we walk with him through his fight— what we learned in the hospital, and what we are learning as we bring that level of care to our home. We welcome our fellow heart families, and families of other chronically sick children, to learn with us.

– Melissa