The Only Time I Held My Son

What Brandon's 19 days taught me about love, loss, and the urgent need for better fertility protocols

The only time I got to hold my son was when he was dying.

I’m comfortable sharing most of my fertility journey, but this part is the hardest.  It’s the story of my son, Brandon.

After multiple failed attempts and losses, I was overjoyed to learn I was pregnant with twins. As a single mother by choice, the news was both thrilling and overwhelming. But I was ready. I had the love, the commitment, and a village behind me.

At my three-month sonogram, the doctor noticed a hazy spot near the lung of Baby A. It was unclear, possibly minor. He told me to come back in a month.

When I returned, the spot was still there, and Baby A (my son) had excess amniotic fluid around him. Concerned, my doctor referred me to a specialist in fetal medicine.

The next four months were like walking a tightrope over the Grand Canyon. Doctors had to carefully manage amniotic fluid levels for my son without compromising his twin, my daughter.

At 34 weeks, I went in for a routine checkup and was told I needed to deliver immediately. My son was in severe distress.

When Brandon was born, he didn’t cry. I was mid–C-section, unable to see anything, but I could feel the urgency in the room. The nurses whisked him away. I never got to see or hold him.

The first time I laid eyes on my son, I was being wheeled into the NICU on a gurney—something strictly against policy—due to my mother’s persistence.

What I saw was every parent’s worst nightmare.  Brandon was on a start-of-the-art forced-air ventilator. Two nurses were monitoring him around the clock. My son was hanging on to life by a thread.

Each day was a blur of hope and horror. I watched Brandon suffer in silence through an incubator, his cries muted by tubes. I couldn’t touch him. I couldn’t save him.

On Day 16, we got a diagnosis: lymphangiectasia, a rare genetic condition where the lungs don’t fully develop. Most babies with it die at birth. Technology could prolong Brandon’s life, but it couldn’t cure him.

“How could this happen?” I asked in desperation.

I used eggs from a 26-year-old donor who passed all the genetic tests. I thought I did everything right.

But a few months after Brandon passed, I learned something chilling: my ex-husband (the sperm that was used) carried the same genetic mutation.

He had never been tested. The clinic didn’t screen him because there was no known family history. A simple genetic test would have cost $3,000.

Brandon’s NICU stay cost $750,000.

The emotional toll on my family? Immeasurable.

The only time I held my son was when he was dying.

As I cradled him, I told him how much I loved him. I promised that in death, he would be free from the pain and the brokenness of his earthly body. It was the most excruciating moment of my life.

So why am I sharing this?

Because this didn’t have to happen. A $3,000 genetic test could have prevented it.

If you’re pursuing parenthood through IVF, test your partner—even if they seem perfectly healthy, and there is no known family history.

If Brandon’s story moves you, please share it. It might save another family from heartbreak.

#ivf #ivfgeneticdefect #ivftesttheman