Cole was born healthy and I was told what a “big boy” he was. He was a special boy from the start. My labor came on fast and painful, the doctor fainted right before he was born, it was chaos. However when they told me was born it was peace and silence, like he was ready to be here and already was so brave. For the first 5 weeks things went as expected. I healed, he ate and slept, and everyone loved him so much.
But around week 5 my momma intuition turned on. He was having trouble gaining weight and we were at the doctors often. At two appts I mentioned the color of his eyes, yellow. I had never had a jaundice baby and since it was so many weeks after birth I wasn’t sure what it could mean. I was more or less told “it is fine”. At week 7 on a sunday my husband and I looked at eachother, it wasn’t fine. He was yellow.
Monday- I forced them to see us, yes he is jaundice and we need a blood draw
Tuesday- blood draw, that evening I got a vague call that I had “done good” in catching this serious problem with his bilirubin, then I google . . . .and cry the next 12 hours
Wednesday- appt with the specialist confirms what he suspects is the diagnosis I feared biliary atresia
Thursday- Flight to seattle to go to seattle childrens
Friday- Liver Biopsy
Saturday- My birthday and his unofficial diagnosis day, biliary atresia
In just one week, my whole life changed. I was what all moms fear. A mother to a really sick kid. I had a rough transition into hospital life. I had gone from the newborn stage, barely taking Cole out and about to the polar opposite. Flying on a plane and checking him into a hospital. Walking into the room, it was shared, the crib was metal and gray, I felt like there must be germs everywhere. I shouldn’t be there, this couldn’t be happening. I had somehow ended up on the wrong side of the looking glass. So I cried, I cried a lot.
Then the fight started.
Biliary Atresia is a liver disease affecting infants. They are born healthy and normal anatomy however in the first few weeks of life their bile ducts start to shrink and pretty much disappear. This causes the liver to be unable to drain bile, which causes cirrhosis and eventually liver failure. The liver is such an important organ, especially in babies. It is responsible for absorbing nutrients, controlling vitamin levels and more. Newborns are supposed to double their birth weight in the first months of life biliary atresia makes that almost completely impossible for these babies. So on top of heading towards liver failure, they are unable to grow, keep their vitamin levels normal and suffer from the symptoms of liver failure.
There is a surgery with a procedure called a kasai that in 30-50% of kids can give them years until they need a liver transplant and for a select few, a lifetime fix. However it is shown the chances of it working decrease after 60 days of age. We were already racing toward that deadline. So saturday passes, sunday, monday and by that evening we are what I would consider, desperate. We couldn’t understand how they could let days pass. We knew that there are other surgeries, schedules, but the waiting was the worst. However waiting is what biliary atresia is all about. Finally on wednesday night, our daughters 4th birthday, Cole went into what would be an 8 hour surgery. We waited, prayed, talked, tried to eat, attempted to sleep. 2 hours after the surgery ended we joined him in the ICU. As soon as he was conscious again I could sense something new. Cole had grown, like a new and special wisdom has emerged. Although he was only 2 months he would examine each person that came to his crib, study them. He quickly became known for his deep gazes and his really great hair.
From there it was 2 weeks of hourly hardness. Days of improvement, but always alongside a new worry, a new challenge. We wanted a sign the surgery had worked. Deep in my heart, I knew it wouldn’t. It was like I had always known. Still I prayed and hoped. Back to the waiting, there is no way to know if it worked for months. It is a wait and watch the labs and look for green poop. We got about 3 green poops; just enough to get our hopes up. Then came the fade, each diaper more and pale. It hadn’t worked. I wanted to be angry at someone but I knew there was no one to blame. Eventually I even stopped blaming myself for not knowing and fighting, harder and sooner. Maybe if we had known at 4 weeks and not 7 . . .
The good news, Cole recovered from the surgery and we eventually got to head home. Since then we live a mix of normal and oh so not normal. Cole is hitting milestones and we are together as a family making memories. The not so normal, we don’t go out and about - we can’t risk Cole catching any sickness. We have to travel to other cities for appointments, we do weekly blood draws and dr appts, we give him meds and work really really hard to keep Cole eating.
At exactly 3 months from his kasai Cole was officially listed for a liver transplant, there is nothing normal about it. They way it works involves a lot of waiting. There is either a deceased liver donor or living. It is a blessing that liver transplants having a living donor option. This is an amazing opportunity that liver transplant patients have. However find a match is not a black and white process and the surgery is not minor. We have to wait for him to get more sick so he can get his liver from a deceased donor. He has a common blood type, O+, and they tend to wait longer for livers. It is a major sacrifice and unbelievable gift that someone would give Cole whether it be a live donor or deceased. It is a heavy truth to carry each day. Sadly although we wish there was an easy fix, easier road there isn’t.
At about a month of being listed we decided to head down to Salt Lake city to pursue being listed with their center as well. SLC is in a different region than Seattle, which means a different pool of deceased liver donors. Once we arrived we were immediately blown away by the passion and their proactive position. They really want to get these kids better and are super excited about living donor. We also were admitted to the hospital while there to deal with Cole’s ascites (accumulation of fluid in the belly that can become infected), so we got to experience being in the hospital there. Overall we left feeling so grateful we had taken the chance and took the time to head down there..
Josh began the living donor process the next week, meanwhile our friend Sarah started the living donor process in seattle. So at this point we are completely blown away that we have two potential living donor options for Cole. One being someone that is willing to sacrifice for a baby that isn’t her own. It is quite simply that most anyone has ever been willing to do for me. Unbelievable.
He is starting to get more sick, not respond to treatments and be overall in more pain. We had to start a ng feeding tube in order to get his nutrition to where it needs to be. It is hard to know if he is really gaining any weight since he fluctuates so much with the ascites.
We are racing towards the most exciting and terrifying days of our life thus far. He will be in transplant for upwards of ten hours and we just wait. Once he is out, he will be intubated, have 4-5 IV’s, drains out of his belly and more wires than you can track. It seems almost impossible that a body so small can even fit all of that. It will be really, really hard caring for him in the first few weeks.
I cling to just how immediate the healing will begin. Within days the whites of his eyes will no longer be a deep tinged yellow, his skin tone will adjust, his body will begin to absorb the nutrients it has so badly wished it had. There is so much hope for a healthy future for Cole. His life won’t look like the majority but I know it will be a great one.
To follow Cole's journey and continue to support the Carter Family, please follow the Facebook page below.
Cole's Facebook Page
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