So... A day after my daughter was born, the doctor gave us some news. She had a congenital defect - a partial cleft palette. She told us that this wasn't picked up during the scans during the pregnancy or was overlooked by the sonographer.
I couldn't comprehend this news.
While i knew about a cleft palette, i didn't understand - partial cleft palette.
I did a quick search on the net. Saw some snaps of infants... i was horrified.
But, my daughter didn't look anything like those snaps.
I dug a little deeper... and then started to understand.
Our mouth/jaw is like a small room, with the tongue being the floor and both cheeks being two walls. Our throat forms the back opening. The roof of our mouth is called the palette. It is formed by a cartilage, which separates the mouth ( where we chew our food) and our nasal cavity ( from where we breathe). This cartilage of my daughter was not fully formed. There was a V shaped hole in the roof of her mouth. So, if she were to drink milk, it had a chance to go into the nasal cavity and she could choke.
Thing was, we were totally in the dark. We'd no inclination during all the scans during the previous trimesters. Maybe, it was for the best, considering that we'd have been stressed beyond anything we'd ever encountered.
But, this was the biggest issue we'd ever faced in our lives till that time.
The partial cleft meant that our baby couldn't form a vacuum in her mouth to suckle. Fundamentally, she couldn't breast feed at all.
She had to be fed milk with a spoon.
There wasn't any week, when my wife didn't cry because of this. I tried my best to keep calm and composed and it was the hardest thing i've had to do for the first year of Princess' life.
She used to cry continuously whenever she was fed with a spoon. She'd invariably puke and milk would come out of her nose. You know, if we ever inhale water through our nose by mistake, or if we choke while drinking water and it comes out of nose...that horrible feeling...she used to feel it at least once a day.
Also, whenever i glimpsed the hole in the top of her mouth, it would give me such a heartache. I'd feel hollow inside, i'd loose my breath and feel as if i was falling falling falling...
Why would God do such a thing ?
Maybe, i should be thankful, that it was a 'partial' cleft palette and not a full ? See a few images on the net, you'll understand what i'm talking about.
Of course, we met a couple of doctors, found a specialist who did corrective surgeries. He advised that we should do the surgery somewhere around the 8-9 month mark. He assured us that it would all be ok. How could we believe him ? This condition gives rise to other issues also...there could be a possibility that she wouldn't be able to speak correctly, not be able to pronounce a few words in the correct manner. That would be something which would be lifelong for her. There could be many many sessions with speech therapists, when she would learn to speak.
Her crying, puking, sometimes even choking continued for the first few months of her life. My beautiful daughter was struggling through her life and she couldn't do anything about it. Neither could we.
Months passed. The day of her hospitalization came near. We got admitted. Surgery happened. Doc said, its gone well. Nothing to worry about. She'll recover fully.
Really ? I wasn't sure. We weren't sure.
That first night in the hospital was terrible. I had her in my lap, and she vomited blood. Maybe it was normal, an after effect of such a surgery, but i didn't know that. I still don't know that. My wife rushed to get the nurses, get her some medication, help her. And i sat holding her on the bed. I just didn't move. Held her tight. Probably prayed or cursed God. Maybe both.
Those few days are a haze for me. Apart from this one incident, i don't remember much from that time.
My sister reminds me of another - My daughter's hands were bound in splints, from her upper arms to her wrists. Fundamentally, she couldn't bend her elbows and get her hands near her mouth. This was to avoid post surgical infections which would happen if she got her hands to her mouth.
We took her home. Took her for a followup exam. Doc said she's fine. Healing nicely. Nothing to be concerned about.
Really ?
We still had to think about her speech ... would she speak clearly ? would she pronounce the alphabet correctly ? Would she need speech therapy ? How would it affect her life ? This was already affecting ours...
It was a financially difficult time for us as well. I was down to less than a 50/- in my bank account. A couple of my utility payments were dishonored. See, this was elective surgery and defined as cosmetic, not covered under insurance.
Time passed.
Her puking lessened. At least, milk wouldn't come out of her nose any more. But she still couldn't suckle. She couldn't learn to drink from a straw. This was still a matter of concern for us.
Thankfully, she learnt to drink from a straw a couple of years later. We were in Nanital with a friend and his family. On the way back, we had to stop and take some refreshments...and just like that she was drinking juice from a tetrapak. She did it on her own and took a load off our shoulders :)
I hope that no one else ever ever ever has to go through this.
We'd thought of a few names for our child in the months preceding her birth (both girl and boy names). We wanted a name which meant something good. We're believers in the fact that our names help shape our destiny and influence our personalities.
After we found out about her condition, all the names went out of the window. We needed a different name.
We settled on Anjika. It means Blessed.
May she always be blessed in whatever she chooses to do.
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