Sisterhood of Angel Mama’s Magazine | Pregnancy & Infant Loss Awareness Edition October 2021
Landon’s Vein of Galen Malformation
Written & Photos by Jamie Riley
Hi. I am Jamie Riley, Landon’s mother. When I was pregnant with Landon, I didn’t believe he was moving around enough and I gave my complaints to the hospital but I didn’t know the difference as it was my first pregnancy. Ultrasound after ultrasound, my baby appears healthy.
Time goes by and now I’m 32 weeks pregnant with my son. My boyfriend and I decided to go to a 3D/4D ultrasound where we find the baby is healthy minus a tumor in his brain. They sent the results to my hospital where they do another ultrasound. Yes, an abnormality was found in the brain. They send me to Rockford, IL since they don’t deal with abnormalities. Rockford does their testing and diagnosis my son at 33 weeks gestation with the Vein of Galen Malformation but however, did not take abnormalities there. Rockford then transfers me to Madison, WI where they are more familiar with the Malformation.
I finally have hope. The Vein of Galen Malformation only affects about 1 in 50,000 people. As you can see, his diagnosis was very rare. Landon suffered from hydrocephalus, meaning the heart and brain become bigger. The doctors at Madison watched him very closely up until he was born. The neurologists believed he would have surgery soon after being born to close off the feeders to the veins.
After being born, Landon was sent to have an MRI on his brain. After the MRI results came in, the doctors told us he was no longer a candidate for surgery as his malformation was too aggressive. After hearing that, we knew our son wasn’t coming home alive. We spent 7 beautiful days with our son in that NICU. His brain malformation caused Landon to die from heart failure. His kidneys and lungs were also going downhill. The Malformation he had starts between 8-12 weeks gestation and looking back at my anatomy scan from 20 weeks, I can see a big mass in his brain and I will always wonder if I had noticed it sooner if he would still be here. This malformation is not talked about enough, nor will it ever be. But this is Landons story. Forever my baby boy.