Marlee Factor Foundation
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faith, determination, inspiration, hope
Helping chronically ill and special needs
children and their families
Don't discount the Marlee Factor! It is in each of us! Especially the children!
Cade
This little guy is Cade. Here is Cade's story as told to us by his mother.
Our 6th and final blessing, Cade Ryan Robinson, arrived perfectly on time December 28, 2011. He was 8lbs, 1oz and the most beautiful little boy ever. Cade failed the newborn hearing screening twice before he left the hospital, but other than that seemed perfectly healthy. At about 5 weeks, Cade had an official hearing evaluation at Nationwide Children's and it was confirmed that he had a mild sensorineural hearing loss. We have another son with such a hearing loss, so we were familiar with the diagnosis. Our other son was scheduled to see his ENT in a few weeks, so I asked them to arrange it so that Cade could go to this appt as well. So when Cade was 7 weeks old, we went to this appointment and that's when things began to spiral out of control. Luckily there were some angels on earth there that day.
The lady that weighed him asked me how long he had been jaundiced...I had a feeling something was wrong all along, but I ignored my gut feeling..and honestly I still don't think he truly looked jaundiced that day. But thanks to her, I asked for the Nurse Practioner to look at him. She didn't really think he looked jaundice either, but called his pediatrician and got the order to have some labs done that day. We went on about our day. Later that day, on our way home, Cade's Dr called and said that he had already spoken to a liver specialist at Children's and he needed to get there as soon as possible.
I wish I could've been prepared somehow for the weeks and months ahead! Two days later we went to Children's for an appt with the liver Dr, and the testing began. They suspected that Cade had Biliary Atresia, a random disease of the liver that only affects newborns within the first few weeks of life. Basically something happens in the liver that causes the bile duct coming from the liver and gallbladder to scar shut, so then bile cannot drain and it just sits in the liver and starts to damage it. It is a very random disease, with no known cause and the only known cure is a liver transplant.
There is a procedure that can be done if the disease is caught in time, usually by the time the baby is 8 weeks old, called a Kasai procedure. There is no guarantee this procedure will work, or if it does, for how long. Almost every baby who has this disease eventually will require liver transplant for survival, although there are many kids that reach adulthood without having transplant. Every case is different and there are many variations to what can and does happen. Cade was 8 weeks and 2 days when he had his Kasai. He never seemed to start to recover from this, and on day 6 post-op, he was taken back to surgery emergently, where they found that the right side of his liver had died and needed to be removed. From that point, Cade was very critically ill and stayed in ICU for a few more weeks.
He survived sepsis, DIC, and everything else that was against him! Finally after a 24 day stay at the hospital, we were able to bring him home! About a week later, his incision opened and we had to take him back for a third surgery, but after 5 days we got to bring him home again. From that time he continued to improve, slowly has gained weight and had been able to stay out of the hospital.
Home is where Cade loves to be! He is the baby brother of a big family..He has 2 sisters, McKennah is 17, and Gabriella is 14. Cade also has 3 big brothers, Cole is 16, and twins Hunter and Brice are 12. Cade is very well loved by his family and the community. Recently Cade had to go back to surgery to have a liver biopsy, because they were concerned about a bump on his belly. There was some concern that it could be Hepatoblastoma, but by the Grace of God, it wasn't!
Unfortunately he does have some new areas of necrosis in his liver, so for that reason, he is being referred to the Transplant Team in Cincinnati, but that does not mean he will be listed for transplant anytime soon. We believe that he can be healed through Christ..and we encourage everyone to continue to pray for him. Remember the hearing loss that started all of this? He was reevaluated and no longer has a hearing loss!! We believe that was God's plan for getting him where he needed to be and seen by the right people. Thank you Jesus! We do encourage everyone to donate blood and consider registering to be an organ donor, and even when it seems impossible, Keep the faith!
Our 6th and final blessing, Cade Ryan Robinson, arrived perfectly on time December 28, 2011. He was 8lbs, 1oz and the most beautiful little boy ever. Cade failed the newborn hearing screening twice before he left the hospital, but other than that seemed perfectly healthy. At about 5 weeks, Cade had an official hearing evaluation at Nationwide Children's and it was confirmed that he had a mild sensorineural hearing loss. We have another son with such a hearing loss, so we were familiar with the diagnosis. Our other son was scheduled to see his ENT in a few weeks, so I asked them to arrange it so that Cade could go to this appt as well. So when Cade was 7 weeks old, we went to this appointment and that's when things began to spiral out of control. Luckily there were some angels on earth there that day.
The lady that weighed him asked me how long he had been jaundiced...I had a feeling something was wrong all along, but I ignored my gut feeling..and honestly I still don't think he truly looked jaundiced that day. But thanks to her, I asked for the Nurse Practioner to look at him. She didn't really think he looked jaundice either, but called his pediatrician and got the order to have some labs done that day. We went on about our day. Later that day, on our way home, Cade's Dr called and said that he had already spoken to a liver specialist at Children's and he needed to get there as soon as possible.
I wish I could've been prepared somehow for the weeks and months ahead! Two days later we went to Children's for an appt with the liver Dr, and the testing began. They suspected that Cade had Biliary Atresia, a random disease of the liver that only affects newborns within the first few weeks of life. Basically something happens in the liver that causes the bile duct coming from the liver and gallbladder to scar shut, so then bile cannot drain and it just sits in the liver and starts to damage it. It is a very random disease, with no known cause and the only known cure is a liver transplant.
There is a procedure that can be done if the disease is caught in time, usually by the time the baby is 8 weeks old, called a Kasai procedure. There is no guarantee this procedure will work, or if it does, for how long. Almost every baby who has this disease eventually will require liver transplant for survival, although there are many kids that reach adulthood without having transplant. Every case is different and there are many variations to what can and does happen. Cade was 8 weeks and 2 days when he had his Kasai. He never seemed to start to recover from this, and on day 6 post-op, he was taken back to surgery emergently, where they found that the right side of his liver had died and needed to be removed. From that point, Cade was very critically ill and stayed in ICU for a few more weeks.
He survived sepsis, DIC, and everything else that was against him! Finally after a 24 day stay at the hospital, we were able to bring him home! About a week later, his incision opened and we had to take him back for a third surgery, but after 5 days we got to bring him home again. From that time he continued to improve, slowly has gained weight and had been able to stay out of the hospital.
Home is where Cade loves to be! He is the baby brother of a big family..He has 2 sisters, McKennah is 17, and Gabriella is 14. Cade also has 3 big brothers, Cole is 16, and twins Hunter and Brice are 12. Cade is very well loved by his family and the community. Recently Cade had to go back to surgery to have a liver biopsy, because they were concerned about a bump on his belly. There was some concern that it could be Hepatoblastoma, but by the Grace of God, it wasn't!
Unfortunately he does have some new areas of necrosis in his liver, so for that reason, he is being referred to the Transplant Team in Cincinnati, but that does not mean he will be listed for transplant anytime soon. We believe that he can be healed through Christ..and we encourage everyone to continue to pray for him. Remember the hearing loss that started all of this? He was reevaluated and no longer has a hearing loss!! We believe that was God's plan for getting him where he needed to be and seen by the right people. Thank you Jesus! We do encourage everyone to donate blood and consider registering to be an organ donor, and even when it seems impossible, Keep the faith!
If you would like to donate to Cade and his family please write "Cade" in the description section on the donation screen.