Gabe…AKA, Little Hulk…was born on October 26th strength he’s shown during his short life…and even before his birth!
I was 19 weeks pregnant when I went for the usual mid-pregnancy ultrasound to check on development and when most people find out the gender of their baby. We found out we were having boy! We were thrilled! Our joy quickly turned to worry when the doctor came in and said there showed some abnormalities in development and we needed to go see a perinatologist. Two days later I was on another table for two hours getting three different types of ultrasounds done.
The news was not good. He told us numerous abnormalities were found. These included an abnormal appearing intracranial structure. The fetal brain looked unusually homogenous, and landmarks were difficult to identify. The floor of the right cerebral ventricle had an irregular surface consistent with a subependymal hemorrhage. Additional sonographic findings included echogenic loops of bowel, a small amount of ascites, enlarged liver, and severe fetal anemia…it seemed like the bad news was never-ending. He wanted to see us back in a week to reassess the brain velocity levels for anemia.
The next appointment’s ultrasound findings concluded the liver seemed larger with more calcification, more echogenic bowel was seen, and the velocity levels in the brain were still elevated, but significantly less than the week before. This would indicate that the fetus is recovering from anemia…finally, some good news we thought! Then, on our car ride home we were reading his report from that day. It read “If this fetus survives to delivery, I expect the infant to be severely and profoundly abnormal because of the likelihood of significant neurological damage. I also believe his is a high likelihood of an intrauterine demise before she reaches full term.” We were crushed.
Now given these findings, we knew the baby was battling an infection. The Dr had some ideas as to what it could have been, CMV (cyto-mega-lo-virus) being one of the viruses. I did many panels of bloodwork but we opted out of any amnio testing due to miscarriage risks. Nothing came back conclusive. We were also given the opportunity three times to end the pregnancy. That was not an option. This is how we came up with the baby’s name…Gabriel…meaning God is my strength. We knew Gabe was going to need every ounce of strength he could get to battle this infection.
We had many visits throughout the pregnancy with our perinatologist. We were told over and over nothing had changed besides his recovery from the anemia. Then it was “if he would continue to fight to
make it”, then it turned into “be prepared for a stillbirth”, and from there it turned into, “if he makes it full term, he’d be a small baby.” We were told every possibility you could imagine up until the end.
My labor began as any other normal labor. I was 39 weeks…I made it to full term! Gabe was ready to come out! After 18 hours of labor he arrived. 6 lbs, 3 oz, 19 in long…a perfect size! Gabe never cried, but somehow I forgot all of that when I had the chance to hold him on my chest for a brief 30 seconds. He was awake, his eyes were open, and he looked perfect. He was quickly whisked away to the NICU and later that day I was wheeled over to see him. My feelings of “he looked perfect” were quickly replaced when I saw him. I then felt heartbreak. We weren’t allowed to hold him. The nurse said he was very weak. He looked sick, very drained. He was on oxygen for his breathing and many wires were attached. It was a very scary moment for me.
The next day, the news got worse. They suspected him to be having seizure activity and wanted to transfer him to the specialty hospital in our area. He was transported there via ambulance. I remember feeling so helpless because there I was stuck in another hospital! My husband went with him and stayed there most of the time until I was released and joined them. We stayed at the Ronald McDonald house next to the hospital and there Gabe spent the next 10 days in the NICU. Bottom line, after all the tests were in…it was CMV. I had a recurring infection or was reinfected during my pregnancy. This is rare to happen, but not unheard of. At least we knew what it was that caused all this to happen and the Drs were able to treat him solely for CMV. The results of the EEG came back as well and there was no seizure activity present. We were happy to hear that! Once Gabe was released after his NICU stay, we had a couple of other bumps in the road, but everything seemed manageable. Until he was 6 months old and did have a seizure….
Gabe’s seizures started with a couple of strange jolts a day and quickly progressed from there to having over 100 a day. They diagnosed him with infantile spasms. The seizures became more aggressive and then became very scary with Gabe not breathing during some. Then he was diagnosed with clonic-tonic as well. We have tried 10+ different medications and combinations, ACTH injections, and keto diet. Currently, the Drs are suggesting a VNS. There have been times when he’s had more control than others, but never a seizure free day since his first seizure at 6 months old.
Besides battling epilepsy daily, Gabe is diagnosed with cerebral palsy, cortical vision impairment, and a swallow disorder (has g-tube). He is such a happy boy despite the labels Drs have given him! He’s my pride and joy! He’s taught me more than I could have ever known! He’s my hero!