Kael's Story

This is the story of Kael, where our ashes begin...

In August 2004, our son Kael Xavier was born seemingly very healthy.  Although born by an emergency cesarean as the umbilical cord was wrapped around his neck, he scored a perfect score on his apgars.  Kael was a bit jaundiced as we left the hospital, but nothing that concerned the doctors.

Kael was sometimes fussy and just seemed to have distress in his belly at various times of the day.  We were told that digestive issues were common with babies that were born by C-section and nothing to be concerned with.  Kael was alert, nursed well, and did all the things a newborn baby should do.  As the days wore on, Kael's color went from a slight yellow hue to a deeper orange.  After 11 days home, we took Kael to the doctor due to his color and behavior expecting, at worst, for Kael to need biliruben lights.  The doctor that examined him was impressed at how active and alert Kael was and how healthy he looked despite his color.  She didn't seem too concerned, but took his blood to check his biliruben levels.  We waited for the results in the waiting room, and we received a call from the doctor that changed our lives.  Kael's biliruben counts were through the roof, which was an indication of liver failure.  In shock and denial, we went home to pack up for the Children's Hospital in Iowa City.  That night we still didn't fully understand the severity of Kael's condition.  It wasn't until the following day when we were told "as long as his brain was ok, they could keep trying to help him" that we understood how serious his plight was.  We spent a very long week in Iowa City where Kael experienced seizures and a multitude of other symptoms showing that his body was shutting down.

We were transferred by airplane to Children's Memorial.  Under their care, Kael seemed to improve.  They treated him for something called "neonatal hemochromatosis", although unsure if that was indeed what he had as it's extremely hard to diagnose.  The world's leading expert on this condition actually had his practice at Children's Memorial.  The day that doctor met Kael, Kael had improved so much and was so active that the doctor didn't think he could possibly be his liver patient!  Kael's spirit and body fought his sickness hard, passing important benchmarks to improve his chance at survival.  His body was still struggling to control his blood sugars and to stop bleeding, both important functions performed by the liver.  The doctors felt they had no other choice but to perform a biopsy on his already sick liver to get a solid diagnosis.  A diagnosis was very important to help Kael survive to the 3 month old benchmark.  If Kael could survive to 3 months, his chances of surviving a liver transplant were increased considerably.

We were advised that Kael may not survive through the surgery due to his bleeding issues.  There was a good chance that Kael could bleed to death during the procedure.  After a very long day, we were relieved to find that Kael did survive the biopsy.  However, the doctors still could not make a solid diagnosis as to what was causing Kael's liver to fail.

After Kael's surgery, his condition went from bad to critical.  He was transferred to the PICU as a level 1 transplant patient.  Given that category, it meant he needed a new liver within about 8 days to survive.  Kristin was taken to another hospital to see if she could be a living donor for Kael.  That means a piece of her liver would be extracted and given to Kael.  However, the lobe of Kristin's liver was still too big for little Kael.  We had no choice but to wait.

In the meantime, Kael developed a septic bacterial infection in his body.  As if his sick body didn't have enough to fight, now he had to fight a strong resistant bacteria. that was in his entire bloodstream.  Kael was taken off of the transplant list until the bacterial infection was gone.  Each day his blood was tested, and each day it came back that the bacteria was still there.

Kael's body, due to internal bleeding, gave him a hernia.  His seizures increased.  He had bleeding in his lungs.  His entire body was struggling to survive.  He was put on paralytics so he wouldn't move and hurt himself in any new ways.  We hoped, we prayed, we watched, we waited.

One morning we received the incredible news that Kael's bacterial count had actually gone down.  That meant the antibiotics were beginning to fight off the bacteria!  After an incredibly painful week, we finally had something to rejoice in.  We felt as if we could breathe, even if only a little bit, once more.  Later that day Kael was given a catscan.  They took him off the paralytics just for a short time in order to do the test.  It was such a blessing, because that afternoon as Kristin walked alongside him for his test to be taken, he turned his head at the sound of her voice.  It was one of the greatest last gifts Kristin received from Kael. 

That evening, as we walked from the hospital back to the Ronald McDonald House to eat dinner, we received a call from the doctor.  He told us we needed to head back to the hospital immediately.  We knew it wasn't going to be good news by the tone of his voice.  He showed us the results of the scan.  Kael's liver had shrunk down to the size of a raisin and was no longer functioning.  As bad as that was, the worst news was that Kael had a bloodclot in his brain so his mind was no longer functioning as it needed to.  The words we were told in Iowa City came back to us... as long as his brain was functioning ok, they could keep trying to help him survive.  Given this news, there was nothing left that could be done.

That night, various tubes were taken off of Kael.  The medication that they kept on him was one to help his pain.  We were given the opportunity to bathe our son one last time, even if only with a sponge.  It was odd and incredibly painful, this bathing... a sort of preparing our son for his death.  And yet, it was one last loving moment we had with Kael.  It was one last gift of care we could place over him.

We stayed with Kael all night long, his last on earth.  His body was failing, but his heartbeat remained strong. 

In the morning, the nurse told us it was time.  She let us hold our son one last time.  As we held him, his heart that beat so strong throughout his sickness began to slow.  He knew we were holding him, he knew it was ok to stop fighting.  We told our son we loved him, that it was ok to go.  And then our son was with us no more.  That moment, as awful and beautiful as it was all wrapped into one, was one of the greatest privileges we were given as Kael's parents.  We were there for Kael's birth, and we were there for Kael's death.  It was a gift to be with him in these moments.

After Kael's death, he was diagnosed as having neonatal hemochromatosis (NH).  Everything that could be done to treat this condition was done for Kael.  This condition is one that occurs during pregnancy.  After having one child with this disease, the chances of future children having it is 80%.  This disease, without treatment during pregnancy, is almost always fatal for the child.  To learn more about NH, you can read about it here.  

Kael lived on this earth for 51 days.  He is now more alive than any of us can possibly imagine.

In Christ, we know there are no goodbyes, just goodbye for now.  The words to the song "Homesick" express what our hearts don't have the words to say.

"Homesick" by Mercy Me
You're in a better place, I've heard a thousand times
And at least a thousand times I've rejoiced for you
But the reason why I'm broken, the reason why I cry
Is how long must I wait to be with you

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

Help me Lord cause I don't understand your ways
The reason why I wonder if I'll ever know
But, even if you showed me, the hurt would be the same
Cause I'm still here so far away from home

I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
I've never been more homesick than now

In Christ, there are no goodbyes
And in Christ, there is no end
So I'll hold onto Jesus with all that I have
To see you again
To see you again

And I close my eyes and I see your face
If home's where my heart is then I'm out of place
Lord, won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow
Won't you give me strength to make it through somehow