How do you cope when you’re told that your child only has a few months to live? Read this heartbreaking story of a mom whose daughter had a congenital illness that gave her a time limit on life.
What you can read in this article?
- Atrial septal defect – her daughter’s congenital condition
- How the family responded to the ticking time bomb
My daughter, Eva was diagnosed to have a hole in her heart when she was 4 years old. It is called an atrial septal defect. Having “a 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.
We just brought Eva to the doctor for a regular check-up in January of 2015, when the doctors heard an unusual sound on her heartbeat. After our third visit, our fears were confirmed and the devastating diagnosis became known.
The position where the hole was located did not allow the specialists to perform surgery to close the hole on Eva’s heart. It weakened day by day and the doctors told us that her failing heart was not a good sign. In some instances, this defect was not fatal, but in Eva’s case, the hole was taking a toll on her heart.
“I was told that my 4-year-old had only 18 months left to live”
Atrial Septal Defect
According to the Centers for Disease Control and Prevention (CDC), an atrial septal defect is a birth defect in which there is a hole in the wall (septum) that divides the upper chambers (atria) of the heart. The hole can vary in size and may close on its own or may require surgery.
It can be diagnosed in pregnancy through ultrasound. But depending on the size of the hole, some notice it only after the baby is born and in a lot of cases, it may not be diagnosed until adulthood.
Signs and symptoms of a large or untreated atrial septal defect may include the following:
- Frequent respiratory or lung infections
- Difficulty breathing
- Tiring when feeding (infants)
- Shortness of breath when being active or exercising
- Skipped heartbeats or a sense of feeling the heartbeat
- A heart murmur, or a whooshing sound that can be heard with a stethoscope
- Swelling of legs, feet, or stomach area
- Stroke
One of the most common signs of an atrial septal defect is when a murmur is heard while listening to a person’s heart with a stethoscope. If a murmur is heard or other signs or symptoms are mentioned above are present, the doctor might request for a test (the most common one is an echocardiogram or ECG) to confirm the diagnosis.
Dealing with it
“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. At that moment, time stood still. I was in denial, and my husband took a long time to even digest this piece of news.
But 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 distance ourselves from her from now on so that the pain will lessen? But will that even help? There’s nothing that can prepare you for the death of your child.
We were heartbroken and shattered. I thought to myself, “Why can’t this happen to me instead?”
My daughter has months to live. | Image from Shutterstock
I questioned God and my faith was tested, and 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 this. Our Eva will be taken away from us. Real soon.
The battle with time
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. That’s the irony of it all. Her big heart, which was defective, was the reason why she couldn’t live for much longer.
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,” she once told me. So 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.
From the moment we found out about how many months she had to live, we were battling with time. Every moment with Eva became even more precious.
I kept a mental memory of everything between the three of us. Every activity we did as a family became much more meaningful. Whenever she said she wanted to eat something, go somewhere to play, or 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 that she would be leaving us soon.
Eva was also wise beyond her years; 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 were what kept me and David (my husband) going. It was unbelievable to see a little girl so strong, confident, and fighting for her life till her very last day. In her strength, we found ours.
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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 won’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 that note still play in my mind until 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, knowing her child is just counting down the days to her death? It felt like we had a time bomb over our heads.
But Eva taught us that nobody can fight death. It comes to you when it’s your time. She also taught us to keep ourselves happy no matter how bad the situation is. Our little baby, teaching us life lessons. Who would have known?
Eva’s passing
Eva lived 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 for about a year after the diagnosis.
The day she left us, it was raining very hard. David and I looked up into the sky and visualized our baby playing with her fairies, angels, and Carebears in the clouds. We could hear her laughter, imagine her beautiful smile and sparkling eyes filled with delight and excitement about meeting her new friends.
It has been 6 months since Eva passed away. We miss her terribly, but we are sure she is happy where she is. More importantly, our daughter is now free from any kind of pain.
She remains in our prayers every single day, and I long for the day that she and I will reunite in the heavens above. Until then, we will just wait.
(Story as told to Pavin Chopra)
Republished with permission from: theAsianparent Singapore