It’s January 24th, Alagille Syndrome (ALGS) Awareness day. In honor of ALGS Awareness Day, I recommend watching this quick video. The video explains in better words than I ever could, the genetic disease that carried my sweet Carter home to heaven.

The weight of this day weighs heavy on my heart. I thought today I would be home with my two month old. Instead, I stare at the lonely light of my computer and type about a rare disease that shattered my entire family. As the video explains, the awful thing about Alagille is that it affects multiple organs in the body. Poor Carter, he had this disease about as worse as it gets with as many different systems of his little body affected as possible.

What are the odds you may ask? My husband and I asked the same question.

1 in 30,000.

It’s so lonely to hear your medical team tell you that your son is 1 in 30,000. It makes you feel like no one could ever understand the pain.

Since birth, Carter had all the signs of Alagille present. However, he was only diagnosed in the last days of his life because of how rare this disease is. When the test results from his cholestasis gene panel came back positive for the syndrome, many of our specialists and doctors had to it look up. Beyond that, diagnosis would have been especially difficult for Carter because he also had another medical condition, intestinal atresia, something not commonly associated with ALGS.

Intestinal Atresia was why Carter needed his first surgery at one week old. Some providers were more hopeful than others that Carter’s intestinal atresia would be the only necessary diagnosis, as a small bowel obstruction can often cause neonatal cholestasis and hyperbilirubinemia. Sadly, as much as we prayed for the best case scenario, this was not the case. The liver enzymes and conjugated bilirubin levels never got better. Little did we know, everything was about to get a lot worse and would never get better.  

Even if we had known somehow at birth about Carter’s ALGS, everyone is very confident that an early diagnosis could not have saved Carter because he was just so sick, sicker than most with his disorder. My poor baby. At least you are at peace now and free from your disease.

I think often about the statistics of being 1 in 30,000. Then I recall how Carter’s medical team could only find two other cases with documented examples of intestinal atresia being a symptom of Alagille, one case in Spain and one case in South Korea. Then I think, Wow. What does that make us now, 1 in 1,000,000,000?

That figure is so lonely and unfathomably difficult to wrap my head around. It often causes me to ask God, Why me? Why my family? Why my baby?

I almost wish it was my fault. I almost wish I had simply needed more bedrest in pregnancy or better vitamins or something, because that’s an answer I can control and do something differently in future pregnancies. But who can control man’s future but the Lord?

I did everything right. I went to all my checkups. Did all the screenings. All the anatomy scans. None of this ever came up. To quote my provider, my chart for my full-term pregnancy was “clean as a whistle.” But still I wonder, if we knew ahead of time, Could we have saved Carter? Many would say no, because he was sicker than most with his syndrome. Even so, let’s be hypothetical for a moment. Hypothetically, even if an earlier diagnosis could have helped, can man thwart God’s plan? If it was God’s will to call Carter home and heal him forever from his rare disease, who can stop the LORD?

To say Carter’s ALGS diagnosis and his many medical woes all came as a shock is an understatement. Everything indicated my pregnancy went well. Everything indicated that he would be a healthy baby. Even after birth, Carter had great APGAR scores and spent a few days in my postpartum room. We made plans. My husband and I had plans for the future, none of which involved outliving our firstborn child.

Carter had the cutest little personality and he would not have struck you as a baby with a rare disease. He was so full of light and fire. He was so handsome. 

This all points to the bigger question, Why God?

Who can control the very make up of our DNA but the LORD? He is the one that knits together in the womb. The enemy though, is the one who seeks to kill and destroy. The fall of man brought disease to God’s plan. I know, Christ will return and make all things new and one day there will be no more genetic diseases. 

Nonetheless, I am grieving and I keep thinking of how desperately I want my son to be here with me now. Then I consider, how much heartache and turmoil sweet Carter has been spared from in this world. I often have to remind myself that the things of heaven are better than the things this world has to offer, that any earthly happiness Carter could have experienced with me on Earth is fleeting compared to the true joy set before us in the presence of the Lord:

"How lovely is your dwelling place, 
Lord Almighty! 
My soul yearns, even faints, 
for the courts of the Lord; 
my heart and my flesh cry out 
for the living God...
Better is one day in your courts 
than a thousand elsewhere" 

Psalm 84:1,2,10a

I don’t know if I’m one in a billion or one in a hundred billion. But what I do know is that The LORD has ordained the path before me. He is the mighty one who knit my son together, who numbered his days, and called him home to heaven for healing. He is the one that knew before I was even born, the path set before me. He is the one who promises to carry my family through this storm. He holds me. He holds my husband. Just like He holds the stars. God KNOWS, the names and birthdays of my future children, if we can have more children.

If.

Everyone keeps promising me a rainbow baby, as if that is the reason to have hope. But God has not promised this to me or my husband. As much as that’s what I pray our future holds, I recall the lyrics from a familiar version of the hymn Because He Lives:

How sweet to hold
A new born baby
And feel the pride
And the joy that he gives
But greater still that calm assurance
We can face uncertain days

We can face uncertain days
Because he lives

And because he lives I can face tomorrow
Because he lives all fear is gone
Because I know he holds the future
And life is worth the living just because he lives

And then one day
We'll all cross that river
And fight life's final war with pain
And then, as death gives way to victory
I'll see the lights of glory and I'll know he reigns
Because he lives I can face tomorrow
Because he lives all fear is gone
Because I know, I know he holds the future
And life is worth the living just because he lives
He lives
He lives

My path on this earth may be wearier than most. Thousands may never have to walk it. Thousands may never hear the words, “Neonatal cholestasis” or “Alagille syndrome” or “exploratory surgery whispered in the quiet prison of hospital walls. Thousands may never wail over the NICU bedside of their full term infant, their first born. Thousands may never take their baby home from the NICU only to bring them back to the ER a few days later. But great is the reward that awaits for us in heaven. And while I wait for heaven, life is worth the living just because Jesus lives.

Carter already fought the final war with pain. Carter’s death already gave way to victory. On this earth, my husband and I face a pain that is great and the future is uncertain. But life is worth the living just because He lives.

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