Kaden's Final Surgery
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Kaden's Final Surgery
Kaden is a 3.5 year old little guy who has a Vein of Galen malformation (VOGM) who has undergone more surgeries than the average person goes through in their entire life.
Currently, Kaden is going to undergo a “new” brain embolization/surgery in 10 days.
Recently, Kaden was exhibiting change in his eyes (his eye was lagging) and his dilation was also off which red flagged us to have an MRI done early (February 2019, instead of June). His MRI came back showing serious problems. His Pons (major nerve center in your brain stem) was misfiring and we were told to head to Boston Children's Hospital ASAP.
There they did an angiogram to see if the misfiring in his Pons was due to his malformation or to at least rule out other things, such as infection. His angiogram showed it was due to his VOGM. It also revealed that not only was his Pons misfiring, his entire brain was.
The following week Kaden then underwent an 8 hour procedure in which a catheter was inserted into his femoral artery and his snaked through his arteries all the way to the VOGM in his brain. The doctor then used two micro-catheters that traveled through the first catheter to inject glue and insert a veinous coil to try and curb blood flow through the VOGM.
The surgery was a partial success. Blood flow was reduced but the doctor couldn't reach the VOGM and instead blocked off a major feeder artery to it. Afterwards, -- and 6 hours of laying still (usually 4 but his heparin levels were not where they needed to be to pull his arterial line)--he was discharged from the hospital the next day and seemed more or less fine other than some sleep issues.
We came home after 12 days and he seemed to be doing well but started to complain of headaches. Another MRI showed his brain is still under distress (caused by extreme veinous pressure and congestion due to blood flow through his VOGM) and the Pons was still misfiring.
We sent the results to Kaden's doctor in Boston. His doctor, along with others, have decided that another surgery is necessary. If nothing is done, our son will have permanent brain damage. However, the surgery proposed is also higher risk, much higher than the previous embolizations.
Kaden has always been a complex case (which isn’t ideal with this being a rare disease in itself) and his veins have narrowed so doing the standard embolization through his groin up to his head is no longer an option.
This surgery will require going through his skull by creating a hole and running a catheter through his venous sinus on the right or left side of his brain and then to the VOGM. This will allow the doctor to close off the entirety of the remaining malformation. This surgery is the best option to help his brain and eliminate this problem.
This is a procedure that hasn’t been done before the way his doctors want to do this. Even scarier is that closing off his VOGM can cause life long issues and possibly death.
We, as parents, struggle with doing nothing and having the inevitable happen -- permanent brain damage and/or a stroke in his pons that would leave him with a full body paralysis. So, we have decided on surgery and will be traveling back to Boston in hopes of this being the FINAL surgery.
Kaden’s back story:
Kaden’s rare brain aneurysm (vein of Galen malformation) was found in a late sonogram in July 2015. Our family traveled to Boston, where they specialize in his condition. Kaden was stable after birth, and didn’t have symptoms of hydrocephalus or heart failure.
He under went weekly head sonograms, frequent mri under anesthesia and under went his first brain embolization in June 2016. His second in November 2016.
After constant surgeries- Kaden started having frequent horrible nose bleeds (starting November 2017) that continued over 13 months, led to 4 week long hospitalization, 9 nose cauterizations, many blood transfusions and a lot of testing.
During this time him and our family traveled to Boston twice (in February and June 2018) to attempt another brain surgery. However, due to the complexity of his anatomy of his condition his doctor decided it was best to hold off.
After a nose septoplasty that was attempted, and failed, due to his extreme bleeding - the packing in his nose created a hole which cut off the artery that continued to break open. It was a long 13 months with 911 calls and the uncertainty of not knowing if our child was going to survive.
After months of being stable, and finally having a “normal” hemoglobin level and his iron levels finally increasing his recent symptoms began.
Kaden is a 3.5 year old little guy who has a Vein of Galen malformation (VOGM) who has undergone more surgeries than the average person goes through in their entire life.
Currently, Kaden is going to undergo a “new” brain embolization/surgery in 10 days.
Recently, Kaden was exhibiting change in his eyes (his eye was lagging) and his dilation was also off which red flagged us to have an MRI done early (February 2019, instead of June). His MRI came back showing serious problems. His Pons (major nerve center in your brain stem) was misfiring and we were told to head to Boston Children's Hospital ASAP.
There they did an angiogram to see if the misfiring in his Pons was due to his malformation or to at least rule out other things, such as infection. His angiogram showed it was due to his VOGM. It also revealed that not only was his Pons misfiring, his entire brain was.
The following week Kaden then underwent an 8 hour procedure in which a catheter was inserted into his femoral artery and his snaked through his arteries all the way to the VOGM in his brain. The doctor then used two micro-catheters that traveled through the first catheter to inject glue and insert a veinous coil to try and curb blood flow through the VOGM.
The surgery was a partial success. Blood flow was reduced but the doctor couldn't reach the VOGM and instead blocked off a major feeder artery to it. Afterwards, -- and 6 hours of laying still (usually 4 but his heparin levels were not where they needed to be to pull his arterial line)--he was discharged from the hospital the next day and seemed more or less fine other than some sleep issues.
We came home after 12 days and he seemed to be doing well but started to complain of headaches. Another MRI showed his brain is still under distress (caused by extreme veinous pressure and congestion due to blood flow through his VOGM) and the Pons was still misfiring.
We sent the results to Kaden's doctor in Boston. His doctor, along with others, have decided that another surgery is necessary. If nothing is done, our son will have permanent brain damage. However, the surgery proposed is also higher risk, much higher than the previous embolizations.
Kaden has always been a complex case (which isn’t ideal with this being a rare disease in itself) and his veins have narrowed so doing the standard embolization through his groin up to his head is no longer an option.
This surgery will require going through his skull by creating a hole and running a catheter through his venous sinus on the right or left side of his brain and then to the VOGM. This will allow the doctor to close off the entirety of the remaining malformation. This surgery is the best option to help his brain and eliminate this problem.
This is a procedure that hasn’t been done before the way his doctors want to do this. Even scarier is that closing off his VOGM can cause life long issues and possibly death.
We, as parents, struggle with doing nothing and having the inevitable happen -- permanent brain damage and/or a stroke in his pons that would leave him with a full body paralysis. So, we have decided on surgery and will be traveling back to Boston in hopes of this being the FINAL surgery.
Kaden’s back story:
Kaden’s rare brain aneurysm (vein of Galen malformation) was found in a late sonogram in July 2015. Our family traveled to Boston, where they specialize in his condition. Kaden was stable after birth, and didn’t have symptoms of hydrocephalus or heart failure.
He under went weekly head sonograms, frequent mri under anesthesia and under went his first brain embolization in June 2016. His second in November 2016.
After constant surgeries- Kaden started having frequent horrible nose bleeds (starting November 2017) that continued over 13 months, led to 4 week long hospitalization, 9 nose cauterizations, many blood transfusions and a lot of testing.
During this time him and our family traveled to Boston twice (in February and June 2018) to attempt another brain surgery. However, due to the complexity of his anatomy of his condition his doctor decided it was best to hold off.
After a nose septoplasty that was attempted, and failed, due to his extreme bleeding - the packing in his nose created a hole which cut off the artery that continued to break open. It was a long 13 months with 911 calls and the uncertainty of not knowing if our child was going to survive.
After months of being stable, and finally having a “normal” hemoglobin level and his iron levels finally increasing his recent symptoms began.
Fundraising team: The Cornell's (2)
Joe Nathan
Organizer
Tonawanda, NY
Nic Olemarie
Team member
