That was the moment our world shifted. We decided that day, despite the risks, we needed to know what was wrong with our baby. Not to change anything, but to prepare ourselves for what lay ahead. As we left the room, I felt like the tears would never stop. From that day forward, hope became my constant companion. I was so naive—I had no idea what we were facing. There were tough moments that day and in the weeks that followed, but I clung to hope. If nothing else, we had hope that everything would be okay.
At 21 weeks, I had an amniocentesis, which confirmed our baby had Down syndrome.
On Tuesday, 10th August, at 2:30 pm, our beautiful baby girl, Lila, arrived, weighing 6lbs 8oz. Lila spent five days and four nights in the NICU, and on Sunday morning, she was finally able to join me on the ward. We were discharged that Tuesday after attending our first cardiac clinic together.
Looking back, I realize how much I had been living in a bubble. But that day at the cardiac clinic, the reality of her heart diagnosis fully hit me, and I sobbed uncontrollably all the way home.
Lila’s surgery was scheduled for 15th January, but we needed to help her gain weight first. Unfortunately, Lila struggled with swallowing and wasn’t gaining enough weight, so an NG tube was inserted for feeding. Thankfully, the surgery was a success, and after a few weeks in the hospital, Lila was finally allowed to come home.
The past two years have been a whirlwind, but we wouldn’t change a thing about Lila. One thing I never want is anyone’s pity—please don’t ever feel sorry for Lila. She is incredibly happy, always laughing, dancing, or shouting with joy. I have no regrets. She is so loved, so wanted, and such a huge part of our family. Lila is one very happy little girl.
For Parents and Parents-to-Be of Children with Down Syndrome
Disclaimer: The information provided on Small Steps Online is for educational purposes only and is not a substitute for professional medical, therapeutic, or developmental advice. Always consult with qualified healthcare providers, therapists, or relevant professionals regarding your child’s specific needs and situation. The September Institute and Small Steps Online are not liable for any outcomes resulting from the use or misuse of the information shared here.
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