Logan’s story is so much bigger than his diagnosis.
To fully understand you have to know I had a stillborn baby named Andrew 12 years before I had Logan. Andrew had the same diagnosis as Logan.
I can never forget the day I knew something was wrong with Logan.
We went in for the standard 20-week ultrasound and she said everything was fine, but she wanted us to meet with the Maternal Fetal Medicine specialist because there was one small part of the brain that she could not find. “Probably the positioning, nothing to worry about at this time,” she said.
Then, of course, I went to the waiting room and cried for 30 minutes waiting on the doctor. I knew. That’s when I knew I was reliving my own history.
Weeks of ultrasounds and an original diagnosis of ventriculomegaly turned into a diagnosis of Hydrocephalus. The ventricles were larger at every visit. I read every story I could find, some parents had perfectly healthy babies and the doctors were wrong.
Some parents had stillborn babies. I was miserable, horrified, scared to death all the time. I could not possibly enjoy the pregnancy.
At 32 weeks they mentioned L1 CAM Syndrome as a possibility. L1 CAM Syndrome is a rare genetic disorder that affects 50% of baby boys born to mothers who are carriers. This was the first I had ever heard of this diagnosis. “His thumbs will tell us,” they said. We could not find his thumbs in the ultrasound so that was inconclusive.
At 34 weeks his head size was so large they decided to do a C-Section.
I was so scared. I was scared of how he would look with those ventricles being so large. I was scared if he would live. I was scared if he would ever know who I am, or have any quality of life.
Several weeks later L1 CAM was confirmed and my little one became a warrior and a group of family and friends called Logan’s League was born and rallied around him.
Fast forward through 2 brain surgeries, an 18 day NICU stay, endless specialist appointments, 5 therapies a week, 3 cranial bands, a couple of other surgeries on things like his eyes and 2 hydroceles….
Logan will be two next week.
My sweet, happy, fun, kicking, smiling, shy, baby boy will be two.
He is not “typical”.
On paper he lives up to some of the worst stories I read, yet I’ve never had more joy given to me by any other human.
He is beautiful and smiles at me when I don’t deserve a smile. He melts my heart. He notices lots of things going on around him, he is nonverbal, but if you listen closely he will “speak”.
He is non mobile but if you help, he will go anywhere you go.
I say all of this to say, even the worst news, even the worst imaginable reality can turn into a happy and beautiful life changing moment. Don’t give up hope: your little one needs your hope.
Learn your little one and be their biggest advocate. YOU can do it!–
If you or someone you know has received a fetal syndrome diagnosis, please reach out to us. As a parent-founded non-profit, we have been there. We have resources to help and can connect you with world class fetal centers and specialists.