Baby Gus’s Story

Site created on July 29, 2018

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Newest Update

Journal entry by Danielle Gansen

Gus is doing very well! It has been a very busy six weeks but I wanted to give a quick update on his progress since birth. He and his sister Lana were born on September 26th at 32 weeks gestation. Both babies were born breathing on their own but needed a little help from a CPAP mask due to being premature. His doctors did not immediately remove the shunt he had placed at birth because they wanted to give him time to grow. The shunt, along with a catheter, continued to drain his bladder until his surgery on Tuesday, November 6th. They remove his shunt and performed an exploratory surgery to check for a specific type of obstruction called PUV, which he did not have. The doctors believe that the obstruction has resolved on its own since birth, possibly from just placing the catheter. All of these troubles could have been caused by a tiny flap of tissue, smaller than a grain of sand. It appears that the obstruction was just a bit below his bladder, as urine was able to make it into the urethra. We know this because there is a section of his urethra that is still dilated due to being stretched and then narrows.
      Our two main concerns before Gus was born were his lungs and kidneys. Gus’s lungs had fully developed and show no issues. While Gus’s renal system does not look the greatest due to his system being backed up and remaining dilated even after the shunts were placed and his bladder could drain, his numbers look great and show that he has near normal renal function! This is almost unheard of for kids with this condition, especially after all of the trauma to his system while in the womb. We hope that Gus’s renal system continues to heal and develop normally but we don’t know what the future holds.
     As the doctors had predicted before he was born, Gus was born with secondary Prune Belly Syndrome due to his bladder and abdomen being so stretched out for so long while in the womb. This did not allow Gus’s abdominal muscles to develop and as a result he has no abdominal wall. This does not cause him any pain or discomfort but it does impose some limitations on his physical abilities. We will also need to be cautious to help him avoid any trauma to his belly, as he has no ab muscles protecting his organs. There are options we will have when Gus gets bigger to improve this aspect of his health. One possible option is an abdominoplasty, where they would take a small amount of muscle from the back of his leg and use it to build “ab muscles” for him.
    Also, as predicted, Gus’s bladder is very damaged from being stretched beyond comprehension. We aren’t sure what that means for him yet and only time will tell. Much of it depends on how well his bladder is able to heal and how it continues to develop. Next week, they will finally remove the catheter after his bladder has healed from the surgery. At that time, we’ll get a better idea of his current bladder function and see if he can urinate without assistance. 
     There are a lot of “what if’s” for Gus right now. I have been getting some questions about Gus’s future and we honestly don’t know exactly what his future looks like yet, but we are optimistic. His current health is without a doubt, the best case scenario. What we do know is that he had to fight like hell just to survive to birth and is incredibly strong. He has come so far and has surprised so many people. We are very fortunate for how well he is doing now! I think back to when he was a tiny fetus with two liters of fluid in his pea size bladder and I have no doubt that he is a miracle. I know Gus. He is a fighter and will continue to fight and exceed his doctors’ expectations. I feel privileged  to be his mom and hold his hand on his journey. Go Gus go!
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