Miracle for Maddox

On July 24th, my wife surprised me with the great news that we were expecting our 2nd child! I was beyond ecstatic, as our daughter Valentina who was 1 1/2 at the time had a "Promoted to Big Sister" shirt on and it took me a second to realize as I didn't have my glasses on.

On September 20th, 2022 we had a small gender reveal and to our surprise when we cut into the cupcake the icing was blue and it was a boy! I was extremely elated by the news as our perfect family of four (1 boy and 1 girl) was coming into fruition.

Everything was going great and according to plan. Valentina (our daughter) was gearing up and practicing to be the best big sister she can be. Alexandras' (wife) 20-week ultrasound looked perfect and there weren't any issues to be found.

On February 3, 2023 around 11 a.m. - the day before our baby sprinkle - our world was turned upside down. We noticed during the ultrasound, the technician seemed to be extremely focused on the baby's brain. The technician then left the room and a doctor came in and stated everything was fine, that he was just a big baby. We were happily relieved. Then the technician came in and let the doctor know she was in the wrong room. We didn't think too much of it and she apologized and said she would be back. A few minutes later, that same supervising doctor and a fellow came back in and took more images. They gave us the unfortunate news that they have seen something in Maddox's brain and we were going to have to see a fetal medicine specialist at CHOP. We didn't know what to think or do but get to CHOP ASAP.

On Tuesday, February 7th, we arrived at CHOP at 7:30 a.m. and had a long day ahead of us which included a MRI of the baby, as well as an echocardiogram, followed by 3 hour ultrasound. We met with so many people including social workers, doctors and a neurologist. I still feel the complete dread that came over me while we were sitting at the conference table and they gave us the news. Our 32 week old soon be born baby has a rare disease called Vein of Galen Malformation. The prognosis that was given was extremely grim and we were given the option to attempt to treat him if he makes it through birth but the likelihood of that happening was slim and we should think about comfort care and letting him pass on his own and they'd do everything to not let him suffer.

My wife and I sat there in complete shock and numb to this news. I didn't understand how something like this wasn't caught on previous ultrasounds/tests; nor, did I know how to comfort my pregnant wife after this devasting news.

While we are still grasping an understanding of VOGM, we were told that there is a vein in the center of everyone's brain, which is called the Vein of Galen. Maddox's Vein of Galen is causing the heart to pump too much blood to his brain, which is causing the right side of his heart to be enlarged. This not only causes too much blood to his brain and not enough to everywhere else in his body but also in most cases, heart failure. We were told at CHOP that we need to make it to 37 weeks and they can deliver him via c-section. They would then attempt to intervene and save him; however, they explained the odds were against him and there would be a plethora of complications. As we tried to gather ourselves after this horrifying appointment and head to my grandmother's, where my daughter was, we had to give our family this news.

Alexandra luckily found through a Facebook group (Vein of Galen Malformation Support Network, INC) and googled a doctor in New York at Mount Sinai Hospital named Alejandro Berenstein. He has developed a special technique to help slow down the vein by accessing the baby's umbilical cord with a catheter up to the brain and will use a special glue to try and slow the blood flow releasing some of the pressure from the heart. This embolism procedure is risky but it is our last and only hope to help save Maddox. Luckily, on February 13, 2023, we traveled to Mount Sinai in New York and met with many doctors for testing and they are preparing to help us try and bring Maddox into the world on 3/16/2023! We will be going to New York twice a week until then to be monitored and complete testing in hopes of no changes to his heart or brain in the meantime so he can be born and then have his first embolism procedure soon after birth. The great team at Mount Sinai has really given us a better outlook and hope in our situation as Dr. Berenstein does two of these procedures a week and will give Maddox the best chance of making it.

I, nor my family, am not one to ask anything of anyone - especially during these hard times after the pandemic. However, I feel defeated doing this alone and am reaching out to all of you in the hope of any help. We face an uphill and impossible battle but are willing to do anything to save our son and give him the kind of life we dreamt for him. During this time, Alexandra and I will be out of work as we try to navigate through these appointments and studies. Because of this, we are struggling making ends meet financially. Any donation will be greatly appreciated, as well as prayers said for Maddox.

We will be creating a Facebook page and TikTok so people can keep track of Maddox's journey.

Thank you all and please keep us in your prayers.

#Miracle4Maddox