My little brother is an angel - the best kid I know. I am not using his name to respect his privacy.
I remember seeing him for the first time in the hospital. He was SO small. His skin was SO pale. He looked sick. He looked so, so sick. The look on my father's face gave it away: something was wrong. He'd been born with a defective kidney. That was the first sign, although we didn't know it at the time.
He went through a few months an abnormal baby - he slept ALL the time. His pale skin looked as if no blood streamed through his veins. He barely ate, so he didn't grow much for the first three months. We struggled to find an answer - any answer - to why he was so sick, but nobody knew. No one could tell us why he had to suffer. I was so frustrated and angry; I just wanted my little brother to be okay.
Then the doctors told us he they'd found the problem and he needed surgery, and fast. They needed to remove his defective kidney because it was releasing toxins into his body. I was so relieved! So what if he only has one kidney? Lots of people only have one and still live great lives! I was so happy they'd finally found out what was wrong with him. He would be fine after they removed it!
I wish that were true.
The surgery went well and we were all hopeful, but after a few weeks, he got worse instead of better. He still wasn't a normal baby! He was weak, small, and sickly. We'd hoped he would be better after his kidney was taken out, but he simply wasn't.
The doctors learned he had VSD (Ventricular Septal Defect) and ASD (Atrial Septal Defect) - two holes in his heart which made it difficult for the blood to pump properly. Finally, we'd found what was wrong with him! He would be all better after they fixed his heart!
But this procedure was very scary. They had to break his ribs, cut open his heart, and patch up the holes. The doctors would have to disconnect his heart and allow a machine to act as his heart during the procedure. I was so scared. They said it was a relatively low risk procedure. Sure doesn't sound like it, but if he did not get it fixed, he wouldn't be able to function and might even go into heart failure.
The night before his surgery, I held him, feeding him his bottle. No one was around, so I gave him a pep talk. "You're going to get through this. This is the last thing they're going to have to do to you, and then you'll be a normal kid and play and eat and just be okay. Be strong, little guy. You have to make it through. I know you will make it through this."
I'll never forget the day of the surgery. I was in 9th grade and the whole day was a fog - I couldn't stop worrying about him. I thought of all the worst possible case scenarios. I remember sitting in 6th period health class, staring at the clock, and glancing at my phone under my desk. The surgery should've been over: why hadn't I gotten a text? My mind was racing; I burst into tears ran out of the room. After a half an hour in the bathroom crying, I got the text: he was all right. He made it. The relief I felt in that moment was the most comforting thing I've ever felt. It made me cry harder - this time because I was so happy.
The poor little guy wasn't even two, and had already had two major surgeries. The recovery was tough. He hated the hospital. HATED IT. He cried all the time. He couldn't walk or crawl for at least two weeks. He was hooked up to several machines. He looked like an experiment. I wanted to do anything to ease his pain, but there was nothing I could do. It made me feel terrible.
After a few months, he began to get better. We were all so hopeful! Numerous therapists came to the house to work with him, trying to get him back on track. He wouldn't sleep, he ate a bit more, and wasn't as pale. But he still didn't seem like a normal baby. What was it? What else could possibly be wrong? And then we all realized something: he didn't make any sounds. Even his crying was muffled.
We took him to the doctor, where they discovered his vocal cords were fused together. Yet another surgery. On top of that, he had to get his tonsils removed and his throat fixed so he could swallow properly. At least, it was only one surgery.
He began to grow a bit more and he began to make sounds - such a relief! But something still wasn't right. Why couldn't we figure out what was wrong with this poor kid? Why did he have to suffer?
As he grew, he began to look a little different from the rest of the kids. His almond shaped eyes and small mouth were signs, but we didn't know that yet. The problems just kept coming. He had a seizure right in front of me and I had to call an ambulance.
After hours upon days upon weeks upon months researching his symptoms, we learned of a genetic disorder: Velocardiofacial Syndrome. VCFS. DiGeorge Syndrome.
The description fit perfectly: the heart problems, the kidney problems, eating, walking, speaking difficulties, everything. It even described what he looked like. This was it. We found it. Blood test results came back positive, and he was diagnosed with VCFS. It's a genetic disorder and, like Down syndrome, it's a deletion or mutilation of a chromosome. We finally found the demon that was destroying my brother.
His battles were not over, though: his bladder was not working properly, which meant another surgery. He still suffers with other problems. He has trouble speaking because his vocal cords aren't fully developed. He has many therapists just to stay on track, and he's at least a year and a half behind other four year olds. He doesn't look different, but he definitely resembles other people with VCFS. He suffers from terrible anxiety, learning disabilities, many phobias, and cannot stand change. He has a ways to go, many struggles to overcome, but I'm just glad he's alive. I'm so happy that he can play and have fun. If we hadn't found that he had this syndrome, many symptoms would have gone unnoticed and untreated. He could've died. We caught it just in time.
This syndrome affects people who may not even know it as Velocardiofacial Syndrome is a fairly new genetic disorder discovered by Dr. DiGeorge in the 80's. My brother goes for check-ups with him every year.
I'm hoping that by writing this, other people may learn of Velocardiofacial Syndrome, too.
And to my brother, thank you for being you.