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Looking back, Biliary Atresia. | Biliary Atresia Awareness and Research

Looking back, Biliary Atresia.

Launch of the “Biliary Atresia Home screening program”
July 19, 2014
What Biliary Atresia cannot do.
September 21, 2014

Wow! It’s already August and we’re over half way through Summer holidays. Natalie and Kathryn just completed grade 11 and only have one more year at school. It’s not just the realization that this year has gone by so fast, but that nearly 17 years have gone by since we were blessed with two beautiful babies. It’s at times like this that I can’t help reflecting and I find myself suddenly, in the middle of doing something, remembering events as if they happened only yesterday.

Like most families there are good and bad, happy and sad – the joy of finding out we were having twins, the overwhelming love when I held the girls in my arms for the first time, then the shock and devastation of having Natalie diagnosed with Biliary Atresia. The fear and uncertainty for her life and future. The concern for Kathryn’s future – how would we support her if she had to go forward without her twin?. What of our future – would we be strong enough to take whatever was coming?. The agony of being separated from Kathryn while staying in hospital with Natalie still hurts to this day. Memories of kissing Natalie goodbye each time she went for another procedure still brings tears to my eyes.

But like everything, every cloud has a silver lining, and we have met some amazing people through BA and laughed along the way. Initially our support came from our beautiful GP who gave me a great deal of time and the insight of her Hindu religion. We also had the support of CLDF, the Children s Liver Disease Foundation in the UK, and in time as we needed less emotional support and became more inspired by the team to give back, we got involved with some fundraising and events.

Natalie and Kathryn at the time were blissfully unaware of anything being wrong, and we had a mantra – “if she’s alive, she’ll live”. We decided never to hold Natalie back, we would allow her to do whatever Kathryn could unless Natalie herself chose not to. By the time Kathryn was climbing trees, eating mud, hanging upside down on the monkey bars, and jumping across rocks in the sea, so was Natalie. Even if it meant my heart was in my mouth and I was silently praying, I was determined not to let my fears become her fears. I often wonder if we’d have let go so easily if she’d been our only child. I doubt it, and for this I’m even more thankful to have had twins.

It was our experiences of CLDF that inspired us to start BAAR, to bring to Canada what we had in the UK. Little did we realize when BAAR began, just how much Natalie would embrace it and make it her own. I have seen my child grow in compassion and empathy as she has supported and inspired others, seen her come to understand her anatomy, the physiology of her disease and the potential devastation. The journey has included many tears, but also, as she asked her difficult questions, she is developing a spirituality, a belief system and a wisdom way beyond her years, and which I’m sure will support her when she leaves home in a couple of years.

Her sister has been by her side throughout. Yes they have their differences, and being twins this can be very competitive and powerful. It is interesting that Biliary Atresia can make them so close and at times be so divisive. Kathryn has often been Natalie’s protector, her look-out, her confidante and best friend. She is the one who best knows what Natalie is feeling. I have watched as Kathryn has worried for Natalie’s safety, often offering me a reproachful “should she be doing that?” and feared for Natalie’s life while simultaneously been unsure of what her own future would look like without her. Then suddenly when it became too overwhelming the rejection of, and anger at, BA has manifested as a temporary rejection and anger towards Natalie. Like all parents I find myself advocating for each of them, teaching kind words, understanding, patience and tolerance, and especially to have no regrets.

It’s sometimes hard to believe when I think back to those early days, just how lucky and blessed we have been. As well as seeing both our girls develop into young women, we have experienced the kindness of people in their interest in what BA is, their concern for us and the support we have received personally and for BAAR. It continues to be an interesting journey and I’m excited and hopeful to see where all three will go – BAAR, and those two tiny premature babies who, within hours of birth, the midwife had labelled “those spirited little things”.  If only she knew!

      Kathryn & I, before Kasai

Kathryn, mom & me.