Jackson's Story
Jackson was born 4 weeks early due to preeclampsia/high blood pressure; thankfully he could be born naturally. He was not diagnosed as having Hydrocephalus until he was 4 months old. I went to a routine doctors check up, and his head circumference had increased in size again, so the family doctor asked that we get an x-ray and ultrasound of his head done. 3 days later that is when
we got the news. To this day we are still unsure as to why Jackson developed Hydrocephalus, which can be frustrating sometimes. So as we waited for an appointment to see a Neurosurgeon Jackson got really sick one weekend, so we headed straight for Sick Kids Hospital in Toronto, as we were not sure if it was related to the Hydrocephalus. We were admitted for further testing and what his doctors told us was that Jackson’s condition was not the same as other cases, they said what it looked like was that the flow of the fluid was just slow, that it was flowing just not as fast as it should be, so he wanted to wait to see if the situation would correct itself. So his doctor felt that there was no major urgency for us to proceed with the shunt surgery that weekend, so we were sent home with an appointment in two weeks.
2 weeks later we went back for a follow-up ultrasound and visit with his Neurosurgeon Dr Michael Taylor and the situation was not getting any better, but it was still not “serious” enough for the doctor to proceed with the surgery at that point…So we waited another 2 weeks and then another 2 weeks and another 2 weeks, finally at this last appointment, the doctor asked us what we wanted to do, and we just said, “do the surgery” there is no point waiting if he is not going to get any better, and before it gets any worse. Jackson was taken in December 2007 for his Shunt Surgery at Sick Kids Hospital in Toronto; we were there for a few days, and then released, thankfully to be home for his 1st Christmas…. He finally for the first time was able to sit up unassisted, it was the most amazing feeling to see him able to do that… He went back for a few follow up visits and things were going great, he was meeting all the milestones, and was not developmentally delayed in anyway, the doctors were saying that he was verbally advanced, which was an amazing thing to hear…. Up until 2009 Jackson was doing great…He underwent his first Shunt Revision February 2009 at the age of 20mths…. It was so scary and tough to not really know what was going on, until all the tests came back. What ended up happening was his catheter tube that is placed in the ventricle became dislodged, not to the point that it was all the way out, but to the point that it was not working properly which was causing Jackson to be ill and very lethargic. We were in the hospital for a few days before they preformed the surgery, but the day after the surgery Jackson was able to come home and was back to his happy and healthy self…. He bounced back just as quickly as he did from the first surgery he had…. He is such a tough little boy. Even though it is hard sometimes I couldn't imagine life any different. So that surgery didn't last, Jackson had another revision on April 10, 2009, he was in and out of Sick Kids and Orangeville hospital for almost two weeks, as this time the shunt was blocking off and on, so it was not showing on scans that there was a problem, until we were two weeks into it, and he went back down to sick kids on the 9th and that is when his scans came back that his ventricles were larger, so the next day they did surgery....And we were back home the next day, just in time for Easter...
And yet again another surgery May 2009.... This is the sad reality with shunts, they are not perfect....Only a month later, this time Jackson was taking down to Sick Kids via ambulance, which was a little scary. Orangeville to Toronto, really makes you thankful that Sick Kids is so close to home! He had just seen his doctor and I had asked about bumping the shunt and his doctor said that a disconnection doesn't generally happen from something like that. We had gone about the weekend and early the next week is when he starting getting sick again, but it was quick and scary this time, as he was really sick....
Going down in the ambulance was better then being in traffic knowing that your little boy needs help....
So he had another revision, due to a disconnection, and his doctor said that in his 15yrs, he had never seen this happen...
But he said of course it would have to be Jackson....We all laughed and agreed.....
And the last scary situation of 2009 was June, just a week after Jackson's 2nd birthday, we were on our way to the Toronto Zoo, when Jackson started to feel sick in the car, we pulled over and he was sick....We chalked it up to car sickness, as he can get that from time to time....We decided to go back home, he started to get drowsy and was feeling sick again, so I pulled over again, and sure enough, he got sick again....We got home, he was in and out of it for 2hrs, so I called down to Sick Kids and they said with all that had happened over the last couple months, we needed to get him there right away. So yet again, down by Ambulance, and this time, we were lights and sirens...Which was so nerve racking, but I was thankful to have a very nice ambulance attendant to keep me calm....We got down there and this time around no surgery, they figured that he caught a bug, but wanted to make sure he didn't have an infection as he had just had so many surgeries that was a high possibility. They kept us there for 4 days, just to be sure.....
I chalked 2009 up to being a bad year....
April 21st 2010.....Jackson was taken back down by ambulance to Sick Kids to have yet another Revision....This time his belly tube was blocked, so they didn't have to replace the whole unit, just the bottom part of the shunt, and all the tubing in the belly. We were home in two days, and then on April 25th, we woke to his belly incision leaking, so yet again back in the ambulance to Sick Kids to have them do another surgery to make sure there was nothing else going on but to close his belly...
They explained that he is now at a HIGH risk for infection, and these things can take a full year before they present themselves....Not nice for the poor little guy.....
So yet another surgery and yet another hospital stay.....Jackson had an open head wound that he ended up getting a bacterial infection in. He had surgery on May 31st 2010, and we ended up having to stay for a 10 day course of antibiotics. That was the longest stay there, Jackson spent his 3rd birthday in the hospital, not nice.....
Jackson had a drainage issue back in May of 2010, although he did a great job trying to fight it, his body gave in February 2011. He ended up back in the hospital for a couple days, and discharged with the intention of doing an elective surgery in a couple months if things didn't get better. Jackson ended up being rushed down March 27th for his 8th revision. They ended up replacing the valve, and 4 days later he was home. And then June rolled around and Jackson fell ill again, and sadly spent his 4th Birthday in at Sick Kids, we are thankful that the drainage issue corrected naturally. Jackson had a brief hospital stay in June 2012 after multiple months of having what was described as starring episodes. He was later diagnosed with having absent seizures. Jackson has been on medication since and the seizures are under control. Jackson was back in at Sick Kids early 2013 and thankfully no surgery was needed. Sadly Jackson had an ICP monitor placed March 21st 2015 to measure the the intracranial pressure as he was having major headaches and starting to complain of shunt pain. This lead to shunt surgery #9 on March 24th 2015. This amazing, strong, talented little boy shows his family and friends daily what it truly means to live life! He is a FIGHTER and a STRONG BRAVE little boy. Jackson celebrated 6 years surgery free on March 24th 2021! For those wanting to know more about Hydrocephalus, it is a build up of Cerebral Spinal Fluid (CSF) in the brain. This can be a cause of many different things (i.e. brain bleed, meningitis, aqueductal stenosis, tumors, or the unknown). It can occur in people of any age. And believe it or not 1 in every 500 babies are born with it. Because it is so common, it is so crucial to raise awareness. In most cases, a shunt will be placed to help regulate the flow of CSF. Jackson has a VP shunt, which is a catheter tube that goes into the ventricle that is attached to the actual shunt that is then connected to the balance of the tube that runs down his neck and chest and drains the fluid into his abdomen where it is absorbed by his body. Some people receive shunts, which drain the fluid directly into the heart. Hydrocephalus is something that has no cure, so that is why it is so important that we raise awareness, people need to be aware that we haven't had medical advancement in the treatment in over 20 years. Jackson will need a shunt for the rest of his life, and most children that have hydrocephalus will have numerous shunt infections or revisions through out their lives. So that is why it is important that we speak up about Hydrocephalus!!
