Running for a Cause: it was just a normal day...

What it's all about

Prune belly syndrome occurs in about 1 out of 40,000-50,000 births. During fetal development there is usually a blockage that occurs in the bladder that causes fluid to build up in the abdomen and into the renal organs which causes damage to the bladder, ureters, and kidneys. Each case of prune belly syndrome varies in severity and in some cases can be lethal. It is said that 50% of prune belly babies die within a few weeks of birth and of the remaining 50% that survive 20% will die before the age of 2 the remaining 30% survive with varying degrees of damage to the renal organs. Most prune belly babies also have abnormalities with other organs and systems. The heart, lungs, and digestive system can all be affected by this birth defect. It is a very sad case with most prune belly patients making their way into the world, because the birth disorder is so rare and there is very little awareness or education provided to doctors about prune belly syndrome.
When I was pregnant with Miller he was actually misdiagnosed with a posterior urethral valve. At 20 weeks we had an ultrasound to determine the sex of our baby and to make the usual measurements. At this point they determined that Miller had a complete blockage in his bladder, the blockage was not allowing any urine to pass out of Miller's body and process through the amniotic fluid(baby urine is was makes up amniotic fluid and helps develop the fetal lungs) We were sent to see a fetal specialist who diagnosed Miller with the posterior urethral valve. When the doctor told us that there was a chance that Miller may not survive the pregnancy or may not survive his birth the news was devastating. We spent the next 17 weeks monitoring Miller's bladder and kidneys via ultrasound. With each appointment the doctor would note a new abnormality that wasn't in check with the original diagnosis. Prune belly syndrome is sometimes referred to as triad syndrome b/c there are three main abnormalities that are used to make a diagnosis. The first is the fluid built up in the abdomen that fluid prevents the abdominal muscles from forming and prevents the testes from descending. Miller had all three of those abnormalities present before birth but b/c prune belly is so rare our doctor missed the diagnosis. We had spent so much time researching the PUV we were not prepared for what was to come next. After Miller was born he was sent to the NICU for a few days before our pediatrician came to talk with us. He began to tell us that he was so unfamiliar with prune belly syndrome that he had to go back to his medical textbooks and do research to come up with a treatment plan. He then hit us with another blow, there was a 50% chance that Miller could have an intestinal malrotation. A malrotation is when the intestines are not connected to the abdominal wall and they can flip and twist causing a block which can be deadly if not caught in time. Miller was sent to have an upper GI done to determine the malrotation and the next day the radiologist confirmed that he found Miller had a malrotation. We were sent home for one night and then quickly sent to children's hospital in Atlanta expecting Miller to have his first surgery at 5 days old. The fantastic specialists at children's were able to determine that Miller did not have a malrotation and we were sent home! A week later our pediatrician informed us that Miller was also born with a hole in his heart and he needed to see a pediatric cardiologist as soon as possible. He was trying to soften the blow for us so he delayed this information until we returned from Atlanta. We saw the cardiologist the following week and found out that Miller would not need surgery to repair the hole in his heart. The hole was not large enough to need repair and it would eventually close on it's own. Miller does not have to return to the cardiologist until his first birthday! We returned to Atlanta 9 weeks later for Miller to have an MRI done to examine his kidneys and ureters. Miller was scheduled for his first surgery on September 10, 2008 and he had his second on December 3, 2008. Miller recovered from both surgeries like a champ. He will have a few radiology tests done in February 2009 and from there his doctors will decide what to do next. Miller has beat all the odds and proved that prune belly is not as fatal as some may say. There are some children with prune belly syndrome who are not as lucky as Miller is. Many children have to undergo dialysis and kidney transplants before the age of 3. There is no cure for this disorder and it is something Miller will live with for the rest of his life. He has a long road in front of him and we want to do all we can to help the people who helped us when we had no where to turn. We found a website called the prune belly syndrome network or http://www.prunebelly.org/. All the information on the web is very grim and leaves little hope for new parents with prune belly babies. When we found this website we were able to see that there were children, teenagers, and even adults living with this disorder. It was the best thing that happened to us after Miller was born and it helped get us through the rough stuff. This organization offers support to families across the country that suffer from this rare disorder and every year they hold a convention to bring in doctors and specialists who have studied and trained to help prune belly patients. For most it is a fantastic opportunity to speak to doctors who can offer advice that they had not been given elsewhere. This organization has been running off a small website for years and all the funding is provided by the members. The website fund is starting to deplete and soon it may be in danger of shutting down. There are so many families who need this site now and there will be many in the future. I have made it my personal mission to raise awareness while raising a few dollars along the way. I decided to do something that I don't really love to do in order to help my sweet baby Miller. I am pretty sure that Miller did not enjoy any medical procedure he has endured over this past year so I have to chosen to run a race for each and every procedure he has had done to him. I started counting and so far we are up to 12 but the list will continue to grow in the coming year. I have to map out a calender of races but with our recent relocation I am not really sure where I will be. I plan to start in March, as close to Miller's birthday as I can. I am looking for donations from anyone who would like to contribute to this awesome organization. There are families that need the prune belly syndrome network and we are one of them. Please help Miller and please help the prune belly syndrome network.
Thank you to all of our family and friends. You have helped us through a tough year and we love you all!

Wednesday, June 17, 2009

it was just a normal day...

Just a day like any other day, got the kids up, fed them, got them dressed and out the door. At the end of the afternoon I am feeling tired, hot, and extremely frustrated with my crabby kids. As I get home I am exhausted and cannot wait to get the kids down for a nap so that I can sit down and catch up on some emails. I don't normally watch Oprah but for some reason today I thought why not? I have a few minutes to myself so I turned on the tv and started watching Oprah, today she was talking about extraordinary children who have beaten incredible odds, perfect for me right? Of course every story was amazing and hit my heart in a special way but the last story was one that really got to me. The story was of a family from Arkansas who had a baby named Elliot. At 30 weeks gestation Elliot was diagnosed with a chromosomal defect called trisomy 18. The family documented everything from that point on with pictures and journals. They were told that Elliot may not survive the pregnancy and mostly likely would die shortly after his birth. It is not my intention to blog about sad stories but I do have a point. As I watched this story I was reminded of Miller and how much of a miracle he really is. When the doctors found the defects in Miller's body we were told that Miller might have trisomy 18 and we were given terrible odds. Not accepting that fact that we might lose our baby Matt and I opted to have an amnio done to know for sure what we were up against. I guess I don't need to say that the results came back negative for trisomy 18 since we have little Miller here with us big prune belly and all. This story really just reminded me how close was came to losing him and precious his life really is. All babies and children are special and I really feel some are exceptional, Miller is exceptional. It makes me sad to think that I had to watch an Oprah show to remind me of that. As you can guess the family lost baby Elliot but what made Elliot exceptional was that he lived 99 wonderful days! He was a baby that was given the worst odds and he beat them for 99 days. It really was a great show and I hope someone else got to see it. Now I have to remember to not let the heat of the summer and my crabby kids make me forget how lucky I am to have two wonderful babies(except Madison is not a baby she is a big girl, she wanted me to say that).

2 comments:

~Lisa~June 17, 2009 at 8:36 PM
I watched Opera too.... and what you were thinking was on my mind..... it touched very close to my heart as well. Miller is amazing and such a sweet miracle.... I am so proud of our boys :) I cried and cired after watching the Elliot story.... wow.... changed my way of thinking and sweating the small stuff.... hope all is well...
ReplyDelete
Replies
UnknownJune 18, 2009 at 7:52 PM
Hey guys, are you going to make it to the convention? You are doing such a great job raising money and awareness for PBS!! Kelly, I am so proud of you!! You are determined!! Thanks!!! Miller is s adorable!!!
ReplyDelete
Replies