Being thrown into a grim prognosis at a 40 week + 1 day ultrasound during an otherwise normal first pregnancy is like having the floor dropped from under you.
I didn’t want to be induced. Because of that, I went in the day after my due date for a routine ultrasound due to my doctor wanting to monitor his size since he was running big. I knew right away something was wrong. The usually joyful, talkative ultrasound technician was quiet and looked intensely with a furrowed brow at my baby’s image on the screen. His heart was enlarged and there was something in his brain, I found out when my OB came in. She said they were sending me to the hospital for the neonatologist to take a look because they have better quality machines and it could be nothing. I called my husband to meet me at the hospital with my delivery bag and called work saying I wasn’t coming in.
At the hospital, the ultrasound machine quality was actually worse; so, I knew that the quality of the scan wasn’t the issue — something really was wrong.
The neonatologist told us our son had a rare brain condition (we were told 1 in 3 million but it’s more common at 1 in 58,000) called Vein of Galen Malformation. She kept saying “I’m so sorry. I’m so sorry.” I asked what does that mean. She said “99% chance he’ll die. If he survives, he’ll be severely mentally handicapped.” Cue us being rushed in for an emergency C-section.
It was all such a whirlwind. They did my spinal block which caused my blood pressure to drop. To correct that, they gave me meds causing my blood pressure to go through the roof. Then, they lost the baby’s vitals and ran me down the hall screaming “what OR, what OR!?” I heard someone yell “OR 5!” I’ll never forget.
Archer was born at 5:29 PM, and he was 8 lbs 7oz. He was crying, which felt like a good sign meaning he was a fighter. They let me see him for a second before whisking him away to the NICU.
The next few days were tough. I counted the hours until I was allowed to get up after a spinal block and go up to the NICU to see my baby. I went in the middle of the night because I didn’t want to wait anymore. There he was; my rooster in the hen house. He was a big healthy looking baby boy in a room full of little premie baby girls.
They were giving him meds in hopes of reducing the heart failure, and we watched his stats and bloodwork like a hawk in hopes of improvment.
My husband did a lot of research the next few days while I kept sane by pumping. We were doing the only things we could do to help our baby.
With access to a physician friend’s online medical library, my husband found papers by Dr. Berenstein in NYC, who had been treating VOGM for 30 years. He is the pioneer of today’s treatment using glue for embolization.
During this time, a friend found the Facebook VOGM support group for parents which connected us with another VOGM family also in Atlanta whose daughter was actually diagnosed by the same Maternal Fetal Medicine neonatologist 8 months prior. Meeting Lena and her husband at a coffee shop with their healthy daughter who had been undergoing treatment with Dr. Berenstein in New York was a turning point! Seeing this ALIVE and normally developing child gave us so much hope.
At 12 days old, our son was still not improving, and we were medflighted from Atlanta to NYC where he underwent his first embolization the following day.
Over the next 18 months, we flew to NYC 4 times for his treatments, and we got the news that Archer was cured Sept 19, 2019!
Surprisingly, after so much fight or flight, I was still struggling and feeling down, which was confusing since our boy was cured, had no neurological deficits, and was a completely happy, normal kid!
Going though such trauma, both acute and prolonged trauma, for 18 months can put quite a toll on ones mental health. It’s so important to heal and get help during these hard times. Going through such a lonely diagnosis and the toll it takes is hard on relationships.
I became very active on the Facebook support group trying to help others get to a specialist for their child’s life saving surgery. It was so hard seeing families choose to stay local and their child not fare well.
That is when Lena and I decided to start our 501c3 non-profit, the VOGM Support Network. We help families advocate for their children, and we provide emotional, logistical, and financial support to get to a specialist. In addition, we spread awareness to the medical community so that neonatoligists know the correct info, the importance of the child going to a VOGM specialist for treatment, and who those specialsts are to give their patients the best possible outcome.
On rare disease day, February 29th, 2020, we launched the Vein of Galen Support Network. Surprisingly, starting the nonprofit has not only helped hundreds of families affected by VOGM and other rare brain AVMs, but it has been a healing process for us too. As they say, when life gives you lemons, make lemonade, and that is exactly what we’ve done! For more info on VOGM and upcoming events, such as our inaugural gala and sponsorship opportunities, go to VOGM.org!