Happy 1/2 Birthday Baleigh!
Five months ago today our entire world was shaken. It started off as a typical day when we took Baleigh to her one month well check. After I mentioned my concern of Baleigh’s slightly jaundiced eyes her pediatrician who didn’t really see much of the yellowing I noticed, took my concern seriously and drew her labs and said she would call me back if it was anything of concern.
To my surprise a few hours later I get a call from the pediatrician telling me to head straight to the hospital because Baleigh’s bilirubin was dangerously high and it’s concerning for a condition called biliary atresia. While I’m simultaneously trying to remain calm and load everyone into the car I panicked with fear. Of course on the way to the hospital I get on good ol’ Dr. google to look up what this biliary atresia thing is. I instantly break down in tears.
Biliary atresia is a blockage in the tubes that carry bile from the liver to the gallbladder. This causes the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells. This process eventually leads to liver failure and majority of babies diagnosed will need a liver transplant by the age of two.
After pretty much having a textbook pregnancy and delivering her medication free I couldn’t believe this was happening. I would later learn the cause of this rare condition is completely unknown but of course the #momguilt crept in.
After one week in the hospital we were left pretty much in the dark about what her true diagnosis is. Baleigh had undergone a HIDA scan, ultrasound, liver biopsy, and dozens of labs (some of which had to be sent out to research hospitals like Emory & Mayo Clinic). After all of that, they still weren’t able to tell us definitively it was biliary atresia but they also couldn’t rule it out either.
The only thing left to do was for her to undergo a procedure called an intraoperative cholangiogram (IOC). During an IOC they inject dye into the biliary system to see if bile flows. If there is no bile flow the diagnosis of BA is made and they continue on to perform the Kasai. The Kasai procedure replaces the gallbladder and blocked bile ducts with a piece of the intestine to bypass liver and restore bile flow. I was told that this would likely only be a temporary bandage and she would still need a transplant at some point in life. Not to mention all of this would need to be done within the first 60 days of life for optimal outcomes.
Since Baleigh was only around 37 days old we had some time to make a decision. My gut (God) told me that she did not have BA. I didn’t want her to undergo an unnecessary surgery and be put under anesthesia again. I told her doctor I wanted to monitor her over the next month, if things worsened we would proceed with the IOC.
Over that next month Baleigh had labs drawn weekly. Her labs were initially stable then they started to worsen. She also was coming up on 60 days of life so we had no time to waste. A few days after Christmas her GI doctor called me and scheduled her surgery for that next morning, on New Years Eve.
About two hours after they brought her back into the OR her surgeon came out to inform us she did not have BA. We were instantly relieved but still had questions. Since did not have BA, all other genetic/viral possibilities were ruled out we were left with the diagnosis of idiopathic Neonatal hepatitis. INH is a fancy way of saying she has liver inflammation of an unknown origin. We still basically we’re at square one but her odds looked a lot better for a full recovery. We were told it could take months or even years.
Over the last four months gradually her liver enzymes and bilirubin have decreased and are finally normal. She went from taking several medications multiple times a day to only having to take a multivitamin once a day. While she was going through all of this doctors were amazed at how well she looked because her physical appearance did not match her labs.
All I can do is thank God for keeping her these six months. If there’s nothing you take from this please remember these three things:
Parents please let this be a reminder to always trust your instincts. I noticed Baleigh’s eyes looked yellow but didn’t mention it because I thought maybe I was imagining it. It took Brandyn saying something to me about it to validate what I had already seen.
Find a pediatrician who you trust. Had my pediatrician dismissed our concern and Baleigh had turned out to have BA things could have gone a completely different way.
If you are a new parent make sure to monitor your baby’s poop color. They don’t tell you this but if you notice your baby has pale poop or bright colored urine mention it to your pediatrician.
