A baby was diagnosed with a birth defect which would have most parts of the belly developed outside of body during fetus growth and would be delivered the same way. While the news of the baby was painful, the family had little choice but to go ahead with 0% chance of survival of the baby. The family is mine and the little baby is my sister.

Few years ago …

When my mother’s blood test results arrived, they were abnormal, doctor performed an ultrasound to confirm my sister’s growth is not normal. “Her body organs, especially of her belly are growing outside her body, though this is known to medical science, it is extremely unlikely to say anything until the baby is delivered about how the conditions would be” – listening to something like this would put any would be parents to tremendous amount of worry, the case was no different with my parents. 

In her 8th month of pregnancy, my mom insisted that she wants to visit her most trusted God, she believed that He is the only one who can save her baby. My father made arrangements for the visit, with all the pain she managed to travel, pray before her deity for her child’s life.  

I was five year old, when my sister is delivered. As predicted she had complications, but more additions to them. Her complete intestines, liver and many parts of her belly were outside when she was brought to this world by C-section. I don’t know, but my grandfather often used to tell me, “we could see everything, she almost had no skin on her belly”. She was underweight, bony to look at, with all her belly parts out, it was hard for normal person to see her. Imagining her is giving me goosebumps…. 

“For her health condition, it would be highly unlikely to survive. We have to perform two surgeries on her, one now and another one four years later. If she can live through both the surgeries, after 5 years we can say that she is out of danger, till then every second of her life is mercy of Him”, said the doctor. My father was the one who was aware of this truth along with my grandfather. My mother was admitted in a different hospital, since her condition was not good, the doctor insisted that we keep this to ourselves at least until the first surgery is performed.

My sister was in ICU, none of us are allowed to see or hold her. She was wrapped in some kind of plastic along with her internal organs. Since her digestive capability is also less, only IV fluids with medications were keeping her alive. 

O-ve is her blood group, so the surgery cannot be performed unless blood is arranged, it took us two full days to arrange for required blood. The surgery lasted all over the night. How difficult it would have been for my dad, may be the longest night of his life. The doctor came out in the morning at around 7 , “We could not manage to sew back all the parts of her belly back into her body, so we have to leave a sac on her body, which would stay along with her for few days, later we would cover with skin, but the bulge would stay for the next 4 years until the second surgery. She needs to be cared every minute of her life. Please be careful, she is a fighter, her cry was very loud”, she left with a smile.

Doctor’s job almost came to an end, it was our time.

  • My grandmother: She is the one who used to stay with my sister all day in the hospital while she was on IV fluids holding her hand, ensuring hygiene all the time while my sister was in ICU for one month as well as after we brought her home.
  • The pediatrician: My sister used to vomit every liquid intake for at least two months, including medications. Thanks to him and the nurses at his hospital, they used to take special care of my sister.
  • My grandfather: He used to be with my sister all the time, while my dad used to visit my mom at the other hospital. Naturally my mother cannot breast feed her because oral intake is not recommended for my sister. My mother also had to be treated because of this.
  • My father: Being a responsible husband and father at the same time is quite tough especially when the resource called ‘time’ is sparse. He had to do this for over 5 years, being a witness I know how difficult it is.
  • My mother: Poor she, she wants to see her new born and she isn’t allowed. She wants to feed her and people around her say some stories. After 3 days she sees her daughter, wrapped all in surgical cotton and tapes, not even looking at her, no, I don’t want any mother to go through such situation. Finally, she gets to know, her daughter is still not ‘out of danger’.

After two months, my sister started to take oral food, we brought her home. My mom would take care of her during the day and dad during night. He had double duty of office and home. Since my sister had bulge (like half coconut placed on her belly), she is not allowed to crawl, we had to keep an eye every second so that she doesn’t topple on her belly. I have been given the responsibility of being her protector as she was growing up. I still remember how many times during the night my dad used to check if my sister is still breathing. It was very tough for each and every one of us emotionally.

For me, she is a walking miracle. After her second surgery, she really bounced back to being normal fast. His grace, my mom’s belief, lot of people’s prayers, she survived. He had been there with us all through the journey. I have many people to thank starting from doctors, blood donors, nurses to my own family.

When the pediatric surgeon met my mom few years ago, she was surprised to know that my sister is alive. She has no kids but I think God has blessed her with abundance of knowledge and opportunity to spread love to mothers and their children!! A glance at her made me feel divinity.