Make A Child Smile

Bryan's Story
written by mom Shelly

When I was at my 30th week of pregnancy I had my first ultrasound. The doctor called me on a Sunday night to tell me that there was something wrong with the baby. We went out of state for testing and they told us our baby had posterior urethral valves (blockage in his urethra) and babies like that do not live. With a complete blockage like Bryan had, he could not urinate. He had drank in all of the amniotic fluid and it was stuck inside his bladder and kidneys (causing the kidney tissue to be destroyed). Since there was no amniotic fluid around him, he could not practice breathing and his lungs would not develop.

I went home and canceled all the baby things I had on lay-a-way. Then when I began to dilate over a month early, I went back out of state to a major medical center to give birth. The doctors told me they did not want to try and save the baby if his heart rate dropped. I insisted they do everything possible to give this baby a chance.

Bryan was born 5 weeks early and was immediately put on a ventilator since he was not breathing. Miraculously after a few hours he began to breathe on his own. He was not making urine and the doctors felt he would soon die. Even when he had lived for 3 weeks and was making some urine, the doctors told us that if he was to survive he would need to start dialysis. They recommended that we NOT start dialysis and just not treat him at all. They said he would never grow or learn and his life was not worth saving.

We moved him to a different hospital, where he started to eat on his own and his kidney function stabilized enough for us to take him home at almost 2 months old. He was tube feed (through a tube up his nose into his stomach) off an on until he was 4 years old, then he had a g-tube surgically placed.

Since his birth Bryan has had more than 15 surgeries and many more procedures and tests. He spent over 4 years on dialysis and finally had a Kidney Transplant at age 5. I wish I could say that all of this is over, but it will never be. We were finally able to stop the tube feedings, but he still needs to be given a lot of fluid through his g-tube at night in the summer. He can finally take pills and has about 10 different medications.

The medication Bryan must take to keep his body from rejecting his new kidney is also slowly destroying the kidney tissue. Everyday I prayed that he wouldn't go into rejection or become severely ill due to his depressed immune system.

Bryan has also always been developmentally delayed. Even though he had all the symptoms of autism, everyone thought maybe it was all caused by his kidney failure. He was finally diagnosed with Autism when he was 8. Thankfully with early intervention he has improved a great deal and is on the mild end of the spectrum. Bryan also has problems with his bladder, due to the obstruction in his urethra before birth. Thankfully we have been able to get around some major bladder surgery, at least for now.

In 2002 we found out that Bryan had rejection. He had to have treatment which involved IV medications and increasing his anti-rejection drugs and doses. I'm scared that it will happen again. He seems fine though and as far as we can tell, there was only minimal damage caused to his transplanted kidney.

Since then he has had some ups and downs as far as his transplanted kidney. After his last biopsy the pathologists couldn't decide what they were looking at exactly, so they diagnosed him with "borderline rejection," which really doesn't exist. Still, he's doing well and his labs have been pretty stable.

In December 2005, Bryan became a big brother! Jackson was born December 22, 2005. Jackson kind of disrupted our Christmas that year since he was not due until January 20th and since I had a C-section, we were not able to go home until Christmas Day, but I think Bryan feels it was worth it.

Bryan just LOVES his little brother and Jackson feels the same way about Bryan. You would think with so many years between them, there might be problems, but for Bryan, it seems to work out well. He is still developmentally delayed, so doesn't mind playing with baby toys, but is also big enough to pick up Jackson when I need help.

He's a great brother!