Back to Stories
Gabriel's Story
"My husband and I were absolutely thrilled when we found out we were expecting..."
Besides a few weeks of morning sickness, my pregnancy seemed to be going text book. We both desired a son, and sure enough at our 19 week ultrasound, it was confirmed! A son! Once we got the printed pictures of our little angel and the technician left the room, the Dr. came in shortly after. She said there were some concerns and she wanted us to see the perinatologist as soon as possible. We made the appointment for two days later. We were taken aback. We were thinking everything was going great.
I sat on a table for about two hours getting three different kinds of ultrasound to get the best views and info they could get. After the technician left, it seemed like a lifetime before the Dr. came in. I could tell when he began to talk that something was wrong. 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...obviously, no good news. He discussed that all these signs were pointing to some kind of fetal infection. The most common was CMV. (there were also others he explained). He said having an amnio would help determine the source. We declined. He explained that the outcome with intrauterine CMV showing the degree of sonographic abnormalities shown that day was extremely poor, with a high rate of intrauterine demise and profound, permanent neurological damage in fetuses that survive to birth. He discussed the option of termination. We declined! He wanted to see us back in a week to reassess the brain velocity levels for anemia. (we later found out from him that he was almost certain our son would not have made it to the next appointment!)
Well, we went back in a week with my bloodwork results back. Bloodwork showed the positive for CMV IgG, but low IgM, suggesting I had already been exposed to CMV. His notes read, "She does show evidence of a past CMV infection, and significant intrauterine fetal infection is extremely unusual, but not unknown, in secondary maternal CMV infection." We again declined the amnio after discussing how it could (or should I say couldn't) help our son's outcome. He informed us that therapy for congenital CMV has been disappointing. So, it didn't seem like there would be many benefits given his current condition. In his notes it said, "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." As for the ultrasound findings that day, 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 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. I think a lot of people would have panicked. My husband and I gave it all to God. We weren't sure what our son would be like, but we know he would be born and he'd be our special miracle! We decided to give our son the name, Gabriel. It means "God is my strength".
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 and getting nowhere, they gave me an epidural and Gabe was out within an hour! He was born on October 26th. He never cried...I began to get nervous. I knew we'd have a team of people in there, but it was a little overwhelming after he was out. They wrapped him up and laid him on my chest for about 30 seconds before whisking him off to the NICU. Holding him was the best moment of my life! My life changed from that moment on. My son...he overcame so much and I knew he'd be okay. He weighed in at 6 lbs, 3 oz and 19 in long. Not a bad size at all! Once I recuperated a bit, they wheeled me over to the NICU. We weren't allowed to hold him. The nurse said he was weak. He looked sick to me, very drained. He was on oxygen for his breathing. My heart just broke for him. I remember praying over and over, "God, you have him in your hands, you'll take care of him!" They began tests right away and to my knowledge later on, began giving him antibiotics for a couple of different viruses they thought he could have had.
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.
Gabe never had any signs of seizures after an EEG was completed. He was taken off of all other meds and strictly given valganclyclovir. He had a slight case of jaundice, but no evidence of an enlarged liver! The jaundice cleared before they had to do light treatments. The only other issues Gabe displayed at the hospital were with his feeds. His oxygen levels would drop while eating. They told us we just needed to pace him. So, we were fortunate enough to get the valganclyclovir treatment to take home rather than doing a PIC line. Off we went, home sweet home! Or so we thought...
A couple days went by and we noticed Gabe not breastfeeding well and he began to sound very "wet" with the feeds. After my pediatrician called the hospital, they wanted us back for a swallow study. Turns out Gabe was aspirating. So, we spent another 7 days there waiting for his lungs to clear and his sats to get back up on his own without the oxygen for help. Our little trooper fought hard, and we were homeward bound again! Fortunately, we were home for quiet a few months before ever having to return to the hospital again. (We've only been back for a couple of EEGs and pH probe testing since.)
Gabe's diagnoses are cortical vision impairment, reflux, spastic cerebral palsy, hypertonia, microcephaly, swallowing disorder, and most recently infantile spasms. He did eventually begin seizures in late June. They started off with 1-2 jolts a day and now have progressed to 80-100 a day. Now he's also been turning blue with some seizures. We tried 6 different meds and all different combinations. Nothing has worked. Our next stop is the ketogenic diet beginning the first week of November, right after his first birthday. We're praying that it works! We've seen two neurologists and both of them have told us this is the "last straw" to try. It's in God's hands.
As for Gabe now, he's amazing! He is our hero! I've never seen a human being demonstrate such strength! He has to be the happiest baby I've ever come across! We have him in every therapy possible. He's in 7 different sessions a week that include: p.t., o.t.(clinic & pool), vision therapy, feeding therapy, and a nurse that visits once a week. It can definitely be exhausting, but I know it will benefit him in the long run!
What's next? After having an MRI done on the brain, there are still calcifications throughout. We've been told not to expect him to smile...but he smiles and laughs hysterically! Been told he won't talk...but he coos! That may not be words, but that will come next! Been told he won't walk...but he can roll over on his own. Next will come crawling and then walking! No, seriously, however our son develops, he will always be our son and we will accept him for whoever he will be! God wanted him here on this earth for a reason. He's been such a blessing to us in so many ways already, has had Drs scratching their heads in amazement, and will continue to touch people's lives as long as he lives! Here's to our little hero, Gabe! -Heb. 11:1
- Shared by his mother, Brandi