Birthdays and Memories

I had the first of many miscarriages soon after my husband and I moved into our town home, so we were thrilled when I became pregnant again. This pregnancy was much easier than the first. I didn’t get sick all the time, only gained 35 pounds, and I worked full-time until just before the baby was born.

This baby was a scheduled repeat c-section and was supposed to be take place at 8:00 AM on March 27th. But as I lay in the hospital during my check-in exam, the baby’s heart rate dropped and then disappeared. I was rushed into surgery to save the baby’s life and at 6:00 PM on March 26, 1985, Brandon Dale was born weighing in at 9 pounds and 8 ounces and 18 inches long.

Brandon was a sick baby from the start and within ten days of birth, his weight was down to only five pounds. A murmur was heard at his 10-day appointment and he was sent to Children’s Mercy Hospital being admitted as a failure to thrive baby with some kind of heart defect causing the murmur. After many tests and a three week hospital stay, we found out he had a hole in his heart and a damaged mitral valve. The hole was only the size of a dime and the doctor thought with medication, it would become smaller and possibly heal itself. But instead, the hole grew larger, to the size of a silver dollar, and the valve became more and more damaged. He was put on medication to help with the heart damage, but I couldn’t take him home until he was gaining weight on a consistent basis. We would celebrate when he gained even an ounce and when he finally gained a couple of pounds we were able to take him home again.

If this wasn’t enough by itself, there would be more for him to endure. Brandon was born with the same birth defect Vance had (their soft spots closed too soon) and after his heart was stabilized, he underwent neurosurgery at 6 weeks of age to repair it. He proved in this surgery what a strong willed child he would be. Just a few days later, he was happy and eating and ready to go home. He even pulled out his IV just to let the doctor know he was ready. I knew then he was a fighter. And what we went through in the next 6 months, it’s a good thing he was.

Before Brandon’s heart could be repaired, he had to weigh a minimum of 14 pounds. They sent us home with a heart machine and he slept in our bedroom. Every night I would listen to the machine and wait for the sirens to go off. And they did, several times, as he would quit breathing or his heart rate would speed up to dangerous numbers. Every time this happened, I would call the hospital and tell them we were on the way. We became a regular on the 4th floor and the nurses teased us they were going to put his name on the room permanently. Sometimes we would only stay over night until they got him stabilized. But there were a few times we stayed more than a week. I wanted to be home so bad, but I knew I had to do what was best for my child.

Finally after a very harrowing seven months, Brandon had open-heart surgery to repair the Ventricle Septal Defect and damaged mitral valve that was trying to take away his very young existence. I sat in the waiting room at the hospital for 7 hours waiting for his surgery to be over. When he came out, his poor little body was covered in tubes and bandages and an incision going from the top of his chest to his belly button.

He had a tube down his throat for breathing and every time he woke up in ICU and saw me, he would try to cry and scream out. After a couple of days of doing this, the doctor said to pull the tube out and let him go to a regular hospital room. He was out of ICU three days ahead of time and getting stronger and stronger every day. Four short days later, we were given a clean bill of health and sent home. We would see the doctor every 6 months for the first couple of years and he remarked many times what a strong young boy Brandon was becoming.

Those were the scariest seven months I’ve ever experienced in my life. Many times we thought we’d lose him, but he hung in and was a real trooper through the whole thing. I think what he went through in this surgery and what he still faced ahead of him is what has made him the strong young man he is today.

There were complications with the first neurosurgery he had and the left side of his skull caved in. 

So we were back in the hospital to have it corrected. They had to cut open his scull, take out the pieces that had caved in and turn them over to give his head a somewhat normal shape. When he came out of surgery this time, he was not the happy little boy he had been the first time. His face was swollen, his eyes were both bruised, and he ran a high fever for the first few days. We were in the hospital for 10 days this time and I wondered if I had done the right thing. He didn’t look the same and I wondered if he would ever come through it all. We thought all had gone well, but during the surgery, a drill was placed to close to his eardrum. They didn’t know for sure if there would be any long term damage from this and because of his age, we wouldn’t know for another year or two.

Once again, as with Vance and his disabilities, Sunshine Center Preschool was there to help him with physical and occupational therapy. They were the ones to tell us Brandon was partially deaf and helped us get him into programs for hearing aids and began speech therapy so his verbal skills would not suffer. In the beginning we ate “shicken” (chicken) for dinner and he went to “skewl” (school). But after several years of intensive speech therapy and new and improved hearing aids, his speech has become almost normal.

Brandon has grown into quite the young man, earning a place on the Principal’s “A” Honor Roll his sophomore year and graduating high school May 2003. He played soccer for several years, managed the 9th Grade Football and Basketball teams, and had lots of good friends along the way. He even went to a local music competition with a solo during his 9th grade year. Brandon is now in college full time, working towards his IT degree.

Brandon tells his peers that just because life throws you a curve ball at times, that’s no reason to just sit down and take it. Instead you learn from it and grow and find that living with a handicap is okay. His life has never been easy, but I believe he will go far in life because of the hardships he has come through with flying colors. I don’t think I would be the person I am today if it hadn’t been for Brandon.