Having an abortion due to Digeorge Syndrome

Just a few hours ago, we faced a heart-wrenching decision to end our longed-for pregnancy. It was especially painful when our daughter started saying she would have a little brother before we even knew the baby's gender.

Looking back, this journey has been a rollercoaster. From the joy of hearing the heartbeat at 12 weeks to the shocking NIPT results suggesting a rare genetic disorder, DiGeorge Syndrome just days later. I dove deep into research, holding onto hope that the NIPT is just a screening test, with a significant chance of false positives.

During those six weeks of uncertainty, I clung to the hope that the NIPT results were incorrect and that our son did not have a genetic disorder. However, this hope was challenged when we underwent an amniocentesis—a procedure involving a needle inserted through the abdomen to sample amniotic fluid. The results of this test confirmed that our son indeed had a DiGeorge Syndrome.

Receiving such news over a telephone call from the public hospital was devastating. Yet, despite the despair, a glimmer of hope emerged when the nurse explained that it was a comparatively mild case. Moreover, neither my husband nor I carry the genetic mutation; it appeared to be a spontaneous one.

We never actually saw the amniocentesis report. Despite knowing there was a 50:50 chance that our son could lead a somewhat normal life, we decided to hold a gender reveal party. This event was bittersweet—half a celebration to welcome him into the world, hoping the condition was mild, and half a preemptive farewell, in case the diagnosis confirmed severe symptoms and a short life expectancy.

Honestly, I struggled to feel joy at the party; it was overshadowed by the grief of knowing I might soon lose him. Adding to the emotional complexity were the gentle kicks I felt from him throughout the event. Each movement felt like a small greeting, a sign that he was still with me, being “fine” at the moment.

Just now, we reluctantly visited the public hospital, where a genetic specialist discussed our son’s condition. The doctor explained that although the missing portion of our son’s chromosome was small (2.88mb), the section that was missing (tx1 something sorry for confusion, I was too devastated to clarify at the time)could severely impair his body and brain function. There was a likelihood (70%-90%)he would be dependent on others for his entire life due wide range of intellectual disability (moderate to severe). More distressingly, the doctor noted that basic functions like eating or walking will be challenging for him due to lack of calcium, and any manifestation of his symptoms (heart failure, seizures) could be life-threatening from birth onward.

Despite mentally bracing for this outcome, the emotional reality of letting go of my beloved son was overwhelming. Yet, we understood that bringing him into a world filled with constant suffering would be an immense burden. We also had to consider how this would impact our daughter’s life, potentially overshadowing her childhood and beyond.

After receiving the genetic report, we faced the agonizing decision to let go of our joyful, adorable, and deeply desired baby. It was an incredibly painful choice, especially feeling his lively movements inside my belly. However, upon reflecting on the numerous practical challenges we would face and the quality of life he would endure, we decided it was kinder to bear this pain ourselves now rather than prolong his inevitable suffering.

I found myself praying repeatedly, questioning why such a rare condition—one in 4,000—had befallen our family. I asked God, the steward of all life, why this hardship had come to us when we strive to live justly. Through prayer, I began to see that perhaps there is a divine plan at play, one not immediately clear to us. It might not be the right time for us to welcome this child, and perhaps a greater plan awaits us. Though we cannot foresee God's design, in our grief, we find solace in trusting His wisdom, remaining patient and hopeful for future blessings.

I am undergoing the termination procedure now. It will last through the night. It is painful yet brought a peaceful resolution, knowing our baby son is now in a place free from suffering, whole and healthy.

I often grapple with why God allowed us to conceive only to face this heartbreak. It's a question without a clear answer, but I hold onto my faith, trusting that everything happens for a reason, even if that reason is not immediately apparent to us.

As stated in Jeremiah 33:3, "Call to me and I will answer you, and will tell you great and hidden things that you have not known." We prayed fervently for a healthy baby, and although our prayer was not answered in the way we hoped, we believe that in time, God will reveal His purpose. We remain hopeful that one day, He will unveil those great and hidden things we do not yet understand.

Noah, our beloved son, we trust that you are now resting peacefully in God's embrace. One day, we hope, you will return to us as a rainbow baby, and when you do, we pray you'll come back as the healthiest and happiest child in our loving family.