We think it’s Biliary Atresia, but that’s really bad so hopefully that’s not it… Part Two

Post date: Apr 13, 2011 4:02:06 PM

I left off with the comment that two day old Natalie was whisked away to a NICU and our baptism into a world of medicine was begun. And now, let me tell you a story of how “Father knows best.” I implore you; do NOT direct my dad to read this entry. Do not share this with my dad. I’ll never live it down.

Our baptism was truly begun with a Baptism.

Natalie was taken to a NICU in a town an hour away from where she was born. My baby sister Bridget was taken from the same hospital to an ICU just 21 years before, after she was born. She never returned home. I know that was on my dad’s mind.

My baby sister was born with Transposition of the Great Vessels. She lived 7 days. She was operated on by the fantastic surgeon, Dr. Art Rettig. The same surgeon who would perform Natalie’s very first surgery, a cholangiogram.

Dr. Rettig did his fellowship at Children’s Memorial in Chicago. This same place where Natalie would someday have her liver transplant.

Do you see any similarities here?

Dr. Rettig made the comment to us that is in the title of these posts, “We think it’s Biliary Atresia, but that’s really bad so hopefully that’s not it…” I don’t hold a single ounce of ill will toward the man. Natalie’s case confused everyone. She was born with a gallbladder. Albeit a shriveled, ugly, non-working gallbladder. But a gallbladder, nonetheless. And that’s just not common in Biliary Atresia. In “classic” biliary atresia by the time most kids are born, their bile duct structure (gallbladder included) has shriveled up and is not working. But Natalie was born 5 weeks early and it’s a progressive disease meaning it gets worse as time goes by.

Back to my dad. He’d seen things end badly for his child. I know he had his grandbaby’s soul in mind when he told me that we needed to baptize her. I am a Catholic. New babies = Baptism is second nature for me. But the reality of this was too much to bear. I’d had the story of Bridget’s birth and death memorized. I was 4 when she died. Her death is my very first memory. Her death prepared me for my future role, of that I am now certain. But in that moment, I could not face it.

Here I was 2 days after the birth of my child.

I’d had pre-eclampsia. I was induced just two days before following 35 weeks of pregnancy. I was a swollen puffy blob, having gained 30 pounds in the last month of my pregnancy alone. My husband said that at the moment of birth of our daughter my blood pressure had skyrocketed to 250/204. I was still in shock. I wanted my “normal” life back! I was in denial. This wasn’t happening.

Why was my dad suggesting that we baptize my baby? Did he think she was going to die? I dug my heels in. (At least I tried to. I could only fit my fat feet into a chewed up pair of black sandals – that my German Shepherd had gotten a hold of.)

So my dad did the good dad thing. He did the responsible thing. He overruled me.

He called our dear friend Fr. John Stringini. Father John had been the priest at our church when Jason and I met (we met at church, have I mentioned that?). He and my dad arrived at the same time to the NICU. John’s parish was just across the street at St. Bernadette. In they walked, through the sliding NICU doors and over to Natalie’s bassinet. I watched it in slow motion. I remember it in slow motion. I don’t even think I have any pictures of the moment that is forever etched in my mind. And as I watched Fr. John pour the tiniest drops of water over Natalie’s head, my own soul began to be healed. (I am not saying I was able to give it all up to God at that moment, but it was a changing point in my internal torment.)

As a child, while also dreaming of being a mom, I dreamed that my first daughter would be named Bridget. I knew this with the same certainty of my own name. In 1998, Jason and I were not married, and were a few months from being engaged when his brother and sister-in-law welcomed (and named) their daughter Bridget into the world.

Their simple act of naming a child saved my dad (and my mom too) much future grief and heartache. Could you imagine losing a child named Bridget, only to watch a granddaughter by the same name struggle through all that Natalie has?

My God has a miraculous way of aligning everything is His design.

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