With numerous questions swirling in our minds, we sought a deeper understanding of our daughter’s condition. Determined to gather more information, we requested an appointment with a knowledgeable specialist. Fortunately, we were granted the opportunity to consult with a pediatric neurologist at the hospital of Nice. Here are what we learnt.

Concerns and Misconceptions

During our conversation with the doctor, one of our initial concerns was whether our child suffered physically due to her condition of acrania anencephaly. We had previously been informed by another doctor that our child’s brain was exposed to the corrosive amniotic fluid. That led us to believe that our child might experience extreme pain.

To our relief, the expert explained that our child would not experience physical suffering while being in her mother’s womb. She reassured us that there is no safer and better place for a child than the protective environment of the mother’s womb.

Our child’s brain, although lacking the usual skull-defined shape, continues to develop without being dissolved in the amniotic fluid. However, the exact condition and future functionality of the brain remain unpredictable. All of this is due to the missing skull bone which normally helps shaping the brain.

The reality of our daughter’s condition differed from what we had imagined and the general perception held by a lot of people. It became evident that our daughter does not suffer physically while in her mother’s womb. The misconception surrounding the dissolving of the brain in amniotic fluid was dispelled, and we gained a better understanding of the nature of the condition.

Embracing Every Moment

With the reassurance that our daughter does not suffer physically, a concern was alleviated. In the final weeks of her presence, I cherished every precious moment that we had together. I told her stories that I had hoped to tell her over the next two decades, just like any father would to his child. I put my hands on her so that she could feel the warmth and my presence. It was evident that she could hear my voice and she responded by moving her legs. And she always craved for more stories.

We made a choice to embrace every moment with our daughter. We celebrated her presence and cherished the joy she brought into our lives. There was also an immense sadness knowing that our time together would be limited. However, it became clear to me that the duration of life does not determine its worth.

My daughter’s life is short. She is severely disabled. For those reasons, I love her even more. I felt all my love for my daughter condensed in those few weeks.

These days when my daughter is no longer physically present, the memories of these moments remain intact in my heart, forever reminding me of my little daughter.

You won’t regret

Let me assure you, there is no need to worry about your child suffering. Rest assured that your child with acrania anencephaly does not experience any pain or discomfort.

In fact, I encourage you to embrace each and every moment with your child, who can hear you and feel your presence. Seize these precious moments with all your unconditional love. Embracing their presence will be a decision you will never regret.