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He had a mind of his own! Since I had already had two ceaseran sections our doctor wanted to take him out as soon as he completed his 37 gestational weeks. As I started counting down to the day we had set for him, two weeks before that I had to go in for emergency c-section. In the words of my doctor ‘sometimes kids have their own way of telling us they are ready.’ And so he arrived 5 weeks early, underweight and a wee bit small for his age, his eyes all open and big he seemed to be taking in everything of the world he had just arrived in!
For the first time since the day I knew of my pregnancy I felt relieved and an amazing happiness started creeping in. He was here! And as I lay in the recovery room, feeling the fear from the morning evaporate and allowing myself to enjoy the few minutes alone with myself before I faced my new changed life, little did I know or imagine the extent of that change!
When my husband first told me about AJ’s condition, metopic cranio synostosis, I just couldn’t believe it. He was supposed to be perfect! We had already suffered the loss of a child. Our first daughter had been born with a congenital disorder that had needed immediate surgery. She had died on the operating table the day after she was born. Years later we had Nishtha, a perfectly healthy girl again. She is now 8. But, I just couldn’t believe it was happening to us again. I knew how to celebrate the normal, the perfect, the good….but I didn’t know how to happy at his being and yet fear his well being. How was it possible to feel both happiness and fear at the same time?
I had never heard of cranio synostosis before, in fact I didn’t even know babies needed to have open bones in the skull. Thus began my long and never ending (to this day) journey of research, of queries, of doubts, of worries, of denial and above all of obsession! Feeling his head for his other sutures, of panicking every time he cried or didn’t feed well (were their signs of raised ICP?), measuring his head growth….of feeling cheated. Oh and I cried…..
Since we do not have much expertise in this field here in Nepal, we wrote to doctors in the US, UK, Australia, Vienna, Singapore and Bangkok, sent them pictures of AJ’s facial profile and xrays. We shifted between the endoscopic and the CVR surgery options. I was confused and scared of making a decision that I might regret later. What became clear to us was that surgery was indeed inevitable. And finally after three months of emotional upheaval we took a flight to Vienna to meet doctors at the AKH hospital there! We knew of course that there was no escape to surgery…..that no matter how the heart hoped there would be no miracle! A CT scan later we set the surgery date for 11 Jan 2012!
I don’t know if people can understand but I felt a huge weight had been lifted off my shoulders that day! Finally in months, I felt lighter in my heart .....and as AJ steadily grows strong and big each day, doing all the things he needs to be doing, brightening up our lives with his smiles and gurgles we wait for January to come to take on one of the most difficult journeys of our lives. As the days pass I get nervous and I begin to worry again. I know I need to be strong for my little boy, no matter how much it scares me or hurts me….and I pray each day for the strength to take him to the other side!