Fetal Diagnosis: Agenesis of the Corpus Callosum (ACC) ~ 3 min read ~
Dear Lonnie,
Greetings from Croatia, I wanted to thank you for being with me… those were very difficult moments. My heart is as big as a house. I wish you much success & health in the new year. I am sending a picture of my perfect son.
II am Iva, a 39-year-old mother of two. I had really wanted a second child, but I was always waiting for something (a better job, finishing my doctoral studies, etc). When I finally got pregnant the second time (in 2022), everyone was very happy. Apart from the borderline gestational diabetes, everything was fine until 28 weeks.
Because my little girl (11) is healthy, I never thought that anything could go wrong. When you see someone’s child with a diagnosis, you think “I’m sorry,” but for a serious diagnosis to happen to you, it seems far away.
During the ultrasound exam, the doctor said that the ventricles in our baby’s brain were slightly larger, but not worrisome. At the next exam, they grew. During the next, they were even bigger. And then it was suspected that our baby had hydrocephalus. I did an MRI and the doctor said, “Your child has complete agenesis of the corpus callosum.”
I knew that agenesis meant that something was missing, but I had no concept of what it all could mean.
That’s when I turned to the Fetal Health Foundation. Although I am on the other side of the world (we live in Europe, in Croatia), the support I received then was something I will remember for the rest of my life.
Learn more about the Fetal Health Foundation
I have often encountered problems in my life, but there was always a way out. This was the only time I didn’t know what to do next. I just prayed, and that’s where I found peace. Our child is missing part of his brain, and no one could have predicted that would happen. The support meant a lot, but the uncertainty was killing me.
Finally, the birth went perfectly.
Our baby got the highest scores after birth (APGAR 10/10), and we left the hospital after just four days. After just one month, we started early intervention in swimming, physical therapy, listening to classical music, and more.
Thirteen months have passed. If the doctors hadn’t told me, I would never have known my son had a diagnosis. He is meeting all of his developmental milestones, sometimes even early. He crawls, stands, talks, laughs. Everyone adores him. I don’t know what awaits us in the future, but I know one thing — there is always a way out. You just have to believe.
Little Mateo playing with lights at the holidays.
The Fetal Health Foundation serves families from around the globe in a number of capacities, not limited to support through email and phone calls. Founders Lonnie and Michelle Somers work with families to help them receive second opinions, receive treatment for diagnoses, and generally, on how to be an advocate for their babies when faced with a fetal syndrome diagnosis.
