The nail-biting day had arrived. The day we were to find out if our precious little peanut was just messing with us or about to change our lives. We had packed for about a week and had hoped it would not be any longer than that. Usually having most of our close friends living in Halifax (1.5 hours away from home) was inconvenient unless we needed a place to crawl back to after a night of “apple juice” drinking, however, this trip it was a god-send. Especially my best bud’s wife, Cindy. They lived about a 10 minute walk from the IWK and they went above and beyond during our stay at the hospital. They offered a room in their house for us to stay, if needed, and Cindy checked in on us almost everyday. Katie and I dropped off all of our luggage at the Snillis’ (name changed in order to protect their identity) and headed to the hospital to get Isla admitted. Who would have known Isla’s first big outing would be to the IWK, how exciting…

First thing’s first: we headed on down to the first floor of the hospital to get Isla setup for her ultrasound. They wanted to get a look at her liver and other organs as a first measure diagnostic. Isla loved the ultrasound (as evidenced by her sleeping through the entire exam)… well probably not the ultrasound rather the dimly lit room with the soothing hum of the machine fan as well as the warm blanket placed over her (at times, even I was tempted to sleep, but I guess that would be frowned upon being a respectful adult and all). Katie and I were looking intently at the screen in which the ultrasound technician kept flying through different images, snapping pictures as well as sound clips. I don’t know what Katie and I were expecting to see, because to the untrained eye it just looked like a bunch of gobble-y-gook. After about an hour, give or take, the technician finished everything she had to do and went to get the doctor for a final look. When the doctor came in the room both her and the technician brought up a specific area of Isla’s insides back onto the screen. They seemed puzzled and were having a hard time finding her gall bladder. At this time, all we knew was this could be a problem or it could be normal, due to the gall bladder being about the size of a piece of dandruff on a 1 month old. One diagnostic test complete, that wasn’t so bad, now on to patient admittance.

Isla was admitted to the IWK hospital mid-December. At just over a month old, that means both of her parents were admitted as well. There was no way I would be spending any time away from my baby girl while she was in the hospital. Work was being very accommodating and they had allowed me to take as much time as I needed before coming back. We headed up to the 7th floor (pediatric unit) to get setup with our accommodations and I headed back to the Snillis’ house to pick up our things. Here I was, in the freezing cold, walking up University Avenue dragging an oversized luggage bag, diaper bag wrapped around one shoulder, another bag draped over the luggage bag, and the u-shaped breast feeding pillow around my neck like those pillows on an air plane (or as I liked to call it: “the flower-patterned hemorrhoid pillow). Why was everyone giving me funny looks? Who knows? When I had arrived back to the hospital Katie and Isla were all settled in and a lovely Gastrointestinal (GI) resident was poking at her belly (Isla’s belly that is). The resident had finished her examination and advised us to get comfortable while we waited for the GI specialist, Dr. R. When Dr. R and the resident arrived, Isla was content in her crib (or space-ship cage, those hospital cribs are intense!). Dr. R went right to the belly poking and I remember the resident saying how interesting it was that all babies, no matter what part of the world you are in, make the same sounds and gestures (I remember thinking: “that is neat.”). After the examination was complete, Dr. R wanted us to sit down and give him our full attention. He was an older doctor with a grey and white speckled beard to which he claimed babies enjoyed due to its resemblance to Santa Claus. Dr. R went right to the explanation of Biliary Atresia and advised us, that with Isla’s symptoms as well as the ultrasound results, he was about 95% sure it was what she had. This news took the wind right from our sails (or shall I say it was a “bomb drop?”) as it was the first time we had a doctor as certain as this. We kept our cool though and listened to him while he drew his, Picasso of a drawing, of the liver-GI tract.

I am now going to explain, in my understanding, what Biliary Atresia is so if you do not want to be schooled please skip through the rest of this paragraph. However, it will be important to understand as we progress through Isla’s life-story… hint, hint, wink, wink. Biliary Atresia is the blockage or absence of liver bile ducts and it impacts approximately 1 in 15K to 20K newborns in North America (fairly rare and not the odds you want to win). They have yet to determine a cause. The bile duct’s job is to secrete bile into our small intestines where it’s job is to assist with the digestion of fat as well as excretion of bilirubin (by-product of recycled red blood cells in the liver as well as turning an adult’s poop brown). Now the problem with this disease is that the bile ducts of the liver as well as the main bile duct outside the liver are damaged or blocked. When these ducts are blocked the bile has a hard time leaving the liver and entering the gut. The bile builds up in the liver and can cause serious damage or cirrhosis (liver tissue replaced with scar tissue) and the damage can be fatal. The procedure they do to correct the atresia is called the Kasai procedure. In this procedure they dissect the diseased bile ducts in the liver, remove the main bile duct, remove the gall bladder, determine where the liver is draining the most bile, and connect the small intestine directly to that part of the liver (pretty big surgery for such a little thing). This procedure corrects the atresia (or blockage), but it does not stop the progression of the disease in about 95% of cases. It is not a perfect solution and the bile still builds up in the liver causing damage over time. The main objective of the procedure is to tie the child over until they are older and can support a liver transplant more effectively. Essentially, this is what was explained to us by Dr. R and his diagram as well as our own personal research (take what you read online with a grain of salt, though).

Whoa! If you think that was a lot to take in, try listening to that in real life and try learning that your beautiful little lady could potentially have this disease. Dr. R was very good with his explanation as well as making sure we fully understood. We both nodded, both doctors left the room, and then came the waterworks. We both just let the emotions out. We cried, we held each other, we swore to the high heavens, and kept asking why? Being well versed in the woes of healthcare, we are always frustrated by how much people abuse the gift of health. Smoking, excessive drinking, hard drugs, eating crap, and not exercising to name a few. Most adults that get admitted into the hospital are not innocent in their ailments, some do very little to prevent them from happening and literally suck the life out of the “free” healthcare system we benefit from. Then we have a sweet and innocent new life brought into the world plagued with a disease; it’s not fair. It was one of the hardest pills to swallow, being first time parents and all. It is scary enough having a newborn with all of the unknowns, fears, excitement, and joy, but add a disease into that mix and you are playing a whole new ball game. Thank god I have had my amazing wife by my side for so long and knowing that this is just one more challenge in our relationship. We always face everything head on and together and we were determined that this would not end that. Once we vented and got through that sudden blow, we gathered ourselves and put our guard back up. We knew this was going to be a long trip to the hospital and we would have to be strong for everyone. I mean, who wants a room full of adults hysterically crying? That wouldn’t help anyone. At this point, we knew that there was definitely something wrong with our baby girl, not necessarily Biliary Atresia but definitely something. The rest of the week was dedicated to getting to the bottom of what was causing her jaundice and pale poop. Thank god babies are very resilient, too bad daddy isn’t so much.