My son caught CMV in utero and has multiple disabilities

• My son was born at 35 weeks after a routine ultrasound showed calcifications in his brain.
• I had heard about cytomegalovirus when I donated blood, but hadn’t made the connection to my baby’s health.
• I wish I had understood the risks of CMV when I was pregnant.

When I was 35 weeks pregnant with my second baby, I left my computer on at work to go to what I thought was a routine ultrasound appointment.

When the doctor scanned my stomach with the ultrasound wand, his smile faded and his brow furrowed. She explained to me that my son was small, that there were calcifications in his brain and that I had to drive to the hospital and deliver him immediately.

Two hours later, my son was born by emergency caesarean section. He spent five weeks in NICU, where I finally learned he would probably never walk or talk.

During my pregnancy, I caught a virus called cytomegalovirus or CMV. The virus hadn’t caused me any problems, but since my son had no immune system, he couldn’t fight the virus on his own.

I had heard of CMV when I gave blood

Guilt barely describes the emotions I dealt with in those first few months. I thought I followed all the protocols. I didn’t drink alcohol. I didn’t eat sushi. I didn’t have a cat.

The more I researched, the more I learned that few pregnant women are aware of this very common virus. But I can’t say I had never heard of CMV before – those three letters had appeared a few years earlier when I was a routine blood donor.

Every term, I assiduously visited the blood bank which went to the campus of my company. One afternoon, a technician looked at my blood donor card and underlined the three letters with a minus sign typed in the lower right. “Marvellous!” he said. “Your blood can be donated to premature babies!” This meant that I had never contracted CMV.

The Centers for Disease Control and Prevention indicates that more than half of American adults will have been infected with CMV by the age of 40. The virus can be transmitted from person to person through direct contact with bodily fluids such as saliva, blood, or breast milk. Getting CMV after birth poses very little risk.

I was proud that my blood could help newborn babies – but in hindsight I wish I understood that this also meant that I should try to avoid CMV if I ever got pregnant. Eventually, my son received these blood donations because of problems that could have been avoided.

I met other moms who are going through the same thing

I know women who have had a similar experience. Social media makes it easy for us to connect around the world. We share our stories and our struggles as we try to do our best for our children.

Some mothers have had babies who died in utero from CMV, and others have had babies who died shortly after birth. Some have hearing-impaired or deaf children. Some have children with very mild challenges, and others, like me, have a child with multiple disabilities.

Today, my son is 10 years old. He is amazing and has overcome so many challenges. But every day we fight for accessibility and inclusion. We find the doctors and therapists who support him best instead of those who don’t understand. We are working hard to find ways that he can enjoy the same things as my other two children. Our journey so far has been tiring, but my son has taught me a lot. I learned to defend him, but also to defend myself.

Jaclyn Greenberg writes about her parenting experiences as well as the challenges of accessibility and inclusion. She is writing a memoir on the importance of standing up for her children and herself.