Aara you were Born for a Reason - Blog

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KIDS TREATED

Aara you were Born for a Reason

February 6, 2023 | Contributed by Priyal Guliani

It has been 7 years since Aara’s birth. And for me it is her birthday that is a far more painful reminder than her day of passing.

As cruel as it may sound and frankly, I do not care for any judgments but Aara’s passing while remains the most traumatic part of my life, as taking your wrapped up baby for her burial in your hands can never leave your conscience – her passing also was a sense of relief.

Holding our little baby in my arms

Relief of seeing her most painful and arduous journey on Earth come to an end. Three of her four months of life were spent in the ICU, multiple times on ventilator, innumerable tubes around her little frame. Not to mention an open heart surgery when she was less than one month old, followed by multiple endoscopies, drips and tests.  Two operations of her stomach when she was unable to eat or poop after her first major surgery. Resulting in Ileostomy (A bag on the stomach with the intestines on surface for excretion) and Tracheostomy (opening in the neck for the ventilation to switched on and off) , medical jargons that no mother should have to know or discover. Critical congenital heart defects in infants, like the one Aara had, can be accompanied with many medical challenges.

So why is her birth that was meant to be the most special day for me as a new and first time mother became the most difficult?

Because it is a painful reminder of

  • Anything can happen to you: When we hear about illnesses or accidents or tragedies, we always think of it happening to others and not us. I almost took the health of my would-be child for granted. I assumed her health would be all good as I started thinking about life after my child’s arrival or what kind of mother I would like to be.
  • You think you may know it all: In my pursuit of being as organic as possible with childbirth and not to get engulfed in the modern age trends of scan pictures, baby moons and glamorous baby showers or for that matter new age child birthing or rearing methods and concepts prescribed in books, I almost went so much with the flow and so little knowledge about childbirth or newborns. So, to navigate a critical illness like a congenital heart defect in an infant along with newborn challenges was overwhelming to say the least. Making sure your baby doesn’t get an infection before her heart surgery. Feeding her my breast milk as that would save her! Some of my to do list without having the wherewithal of challenging and rationalizing or busting myths.

Aara you were born for a reason

  • Why me, why us, Why her : Even though it has been 7 years, the question of why it happened to us or why an angelic newborn had to suffer all her life, remains. Yes, I have read several books, quotes and more but nothing seems to pacify my anguish. After losing faith and in fact having an absolutely angry relationship with my belief system, I am finally back on the road of faith and spirituality. Yet, I still am, nowhere near forgetting why me and why us. I often hear how strong I am, and I honestly don’t need or never needed this badge of honor – to have lived and endured my child’s critical illness and death.
  • Does She know I am her mother: This is the most heartbreaking part of my journey.  After my vaginal childbirth I wasn’t handed over my child for a long time, I kept wondering what was wrong. Only to know two days later of her illness. What followed was a set of instructions by the doctor on how to handle my newborn that terrified me enough to be scared to handle her. But that was short-lived as less than 15 days after her birth our ICU journey started. Most hospitals in my experience are not sensitized to allow mother and child bonding. I was mostly given 5 minutes in the morning and evening to see my child in ICU. All the time I had to sing to her our little song. I was so psyched to touch her feel her.    And my constant question to the doctors or nurses after getting her daily update was: Does she know I am her mother? And what I regret most is that I didn’t hug her enough till date.

I could enlist many more painful aspects of our journey but as a mother who has seen her child suffer and die, I would like to share some piece of advice to whoever would like to listen.

  • I had huge family support system engulfed in the same trauma during my days in those scary hospital corridors. But I did need some friends to come and just hug and sit with me. Unfortunately, my close friends were in different cities. But I would say just take that trip to go hug your friend sitting in the hospital chair for a loved one.
  • The most insensitive thing you can say or do even if it comes from a good space to suggest a grieving mother to have another child. Or the other child will help you overcome loss. None of this holds true. It had taken immense amount of therapy for me to have another child as it was unplanned. Not just that every single living day I watch my son sleeping to check if he is breathing! And the anxiety or PTSD that you battle every day is no joke. But yes, like in all cases as years go by you learn to deal with your loss.
  • It’s personal but I realized just as our societal customs of no prayer meant of such young child passing etc (reasons not known to me) we tend to sometimes put these events under the carpet and don’t like to talk about it. Some may prefer that way but if one chose to acknowledge the presence of their lost one, please indulge them. For me my daughter is omnipresent
  • Find a purpose. Nothing makes me deal with my grief better than knowing we have been able to support a life. Lot of friends and family and acquaintances have come forward to help and support us and I can’t ever be able to express my gratitude.

We have seen with our eyes how many parents suffered along with us but also battled financial burden like no other. There is a lot of focus on education, which is very important, but one needs health to be able to educate and we don’t have as many institutions covering health costs for children. CHD falls very low in that parameter of consideration for most CSR activities and for corporate donations to charity. And we knew we had to work towards it.

I guess Aara came to us for The Aara Project to be born and my husband and I will always work towards carrying her legacy forward. We have been working through Genesis Foundation to support many children born with a congenital heart defect. The Foundation is doing an exemplary job and is supported by corporate donations to charity and individual donations. However, each one of us can be a part of the mission to save little hearts.

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