I’m Sorry, Your Daughter Has 18 Months To Live

My daughter, Eva was diagnosed to have a hole in the heart when she was 4. It is called an atrial septal defect. Hole in the heart’ is a layperson’s term to describe a congenital abnormality of the heart – congenital meaning present at the time of birth. The term is used to describe an actual hole in the walls separating the heart chambers.

Eva went for a regular check-up in January of 2015, and the doctors heard an extra unusual sound during a heartbeat. After a third trip to the doctor, our fears were confirmed and that was when the devastating diagnoses became known.

The position of her hole did not allow us to go through a surgery to close the hole. Her heart weakened by the day and doctors told us that her failing heart was not a good sign. Yes, there were times that this defect is not fatal, but in Eva’s case, her heart was not working as well.

“I’m sorry but the best you can expect her to live is between twelve to eighteen months.” The worst thing a parent can hear. But that’s exactly what the doctors told us. Time stood still. I was in denial, and my husband took a long time to even digest this piece of news.

Dealing with it

We had to be prepared for the worst. A year and a half at most? How does one even think about their child dying in a year? What do we do? Do we distant ourselves from her now so that the pain will lessen? But how will it? There’s nothing that can prepare you for the death of your child.

We were heartbroken and shattered. Why can’t this happen to me instead? I questioned God and my faith was tested. I tried finding solace in prayers and wishing for a miracle to happen. But at the back of my mind, I knew that there was no fighting from Eva being taken away from us. Real soon.

Eva was an energetic, sweet-natured and extremely loving girl. If you were to ask anyone what her most special quality was, it would be that she possessed such a big heart. The irony of it all. That big heart, which was defective, was the reason to why she wouldn’t live for very much longer.

The battle with time

Eva believed in fairies and angels, always telling me that one day she would fly up into the clouds and “look for those pretty little things”. “They make me happy. Maybe I will find Carebears there too.” I kept her dream alive, telling her to keep a watch out for them as they were finding a partner to hang out with. A strong and beautiful little girl.

We were battling with time. Every moment with her became even more precious. Every activity we did as a family, more amplified in its meaning. I kept a mental memory of everything between the three of us. Every time she said she wanted to eat something, go somewhere to play, do something new, my husband and I would make sure we made it happen. Every wish she had was fulfilled. All because of our race with time.

Eva was our only child, and we were already feeling the emptiness just knowing she’s going to be gone soon. That is a feeling that is indescribable.

Eva was also wise beyond her years and could be described as an old soul. She was very aware that she was sick and had limited time with her family and friends. We tried hiding it from her, but she could tell something was wrong.

Her strength and positivity was what kept me and David (my husband) going. It was unbelievable seeing a little girl so strong, so confident and fighting for her life till her very last day. In her strength, we found ours.

Eva’s health

I remember the day she was too ill to even get out of bed (her health deteriorated very quickly in that one year). Eva was supposed to attend her best friend Mia’s birthday party. It was at Universal Studios and we knew it was a party that Eva couldn’t have fun at because she wasn’t able to go on the rides or do anything that caused strain to her body.

She had made a ‘friendship band’ for Mia as a gift. And along with it, a small card. The words my daughter wrote to her in the note still plays in my mind till today. It said: “Mia, my very best friend and my angel. I will miss playing with you and dressing up our dolls. But don’t be sad when I’ve left the world. I will be watching over you and playing with you from above. All my toys are yours. Never forget me because I never will forget you.”

How does a mother cope when knowing her child is just counting down the days to her death? It felt like we had a time bomb over our heads. But what Eva taught us was that nobody can fight death. It comes to you when it’s your time. And to keep yourself happy no matter how bad the situation is. Our little baby, teaching us life lessons. Who would have known?

Eva’s passing

Eva live a whole and full life of happiness and love. We made sure her last days were filled with laughter, joy and prayers.

Our daughter never made it to 18 months – she lived about a year after the diagnosis. The day she left us, it was raining very heavily. David and I looked up into the sky and visualised our baby playing with her fairies, angels and Carebears in the clouds. We could hear her laughter, imagine her beautiful smile and her sparkling eyes filled with delight and excitement on meeting her new friends.

It’s been 6 months since Eva passed away, and we miss her terribly but we are sure she is happy where she is, and most importantly, out of pain. She doesn’t have to make endless trips to the hospitals, go in and out of numerous surgeries, and be injected a few times a day. She’s in our prayers every single day and I wait for the day she and I reunite in the heavens above.

Till then, the wait continues….

(Story as told to Pavin Chopra)

Mummies and daddies, drop your well wishes to the family of little Eva.