When Brooklyn was born it was one of the happiest days of our lives. At 10 weeks old our worst nightmare became a reality Brooklyn was diagnosed with a rare medical condition called PHACES Syndrome. Every PHACES case is different; Brooklyn's involves a benign tumor wrapped around the back of her right eye. Brooklyn has many malformed, damaged and missing arteries that lead from her heart to her brain, and a central brain issue causing dangerously high blood pressure. As a result some of her main arteries are stiffened. All of this causes a strain on her heart and unfortunately this will lead to heart problems and an extremely high risk of strokes and or brain aneurysm. Also a vast majority of PHACES patients experience severe migraines.
On November 11th 2010 Brooklyn was admitted into Sick Kids Hospital with a blood pressure of 132; an average child’s blood pressure (BP) should be no higher than 90. We could never foresee the whirlwind of events about to take place. Within a few days my wife was awakened at 4 am by a team of specialists exploding into the room because Brooklyn’s BP had jumped to 226 while she slept. Unable to gain IV access they placed a PICC line in her right arm which leads to her heart to administer emergency medication. After numerous tests her specialists determined that due to a central brain issue she does not have the capacity to regulate her BP which is untreatable and permanent. Her BP must be monitored daily. Due to her numerous medical issues the doctors decided that the best course of treatment for her hemangioma would be Chemotherapy for which she underwent a very long 5 and a half months to shrink her growing tumor.
A week before Christmas Brooklyn was released from Sick Kids which was a nice relief to have her home for her first Christmas. Unfortunately on January 2nd she suffered a TIA (mini stroke) and was transported by ambulance from Cambridge Hospital to Sick Kids. After a week she was released and was able to come once again, 2 days later she suffered a stroke event which unfortunately left mild damage to her body but thankfully none to her brain. During the next six weeks she had two more TIA’s along with her constant battle with her BP. After numerous additional MRI's she was also diagnosed with Hydrocephalus (water on the brain) along with thinning of her corpus callosum (the grey matter that connects the two hemispheres of her brain) and two additional anomalies that her team of specialists have been unable to explain. A parent meeting was arranged between us and her numerous specialists to discuss whether or not to it was time to let her come home. The worst day of our life was about to happen, as we sat in the room and listened to all the diagnosis and waiting to hear what they were going to do about them, we asked the question “what’s next?” Her Neurologist looked at us and said we are very sorry, but we don't know and it’s time to take her home and enjoy her. Miracles happen every day, having the knowledge of what Brooklyn’s journey entails but not knowing exactly what Brooklyn’s future is, we do just that…we enjoy every minute of her.
Recently Brooklyn has undergone double eye surgery, and will require another one in the near future. We have also found out that because of her high blood pressure her kidneys are beginning to fail, she has been placed on an extremely strict diet and new medication to try to control the symptoms. She is currently undergoing bloodwork and numerous tests to try to determine the exact cause and how much we can try to slow down this process.
2015 Update: Brooklyn has been suffering with chronic stomach pain for the past year and a half, which can completely debilitate her for days and even weeks at a time. She has been through pretty much every test you could even think to imagine, but her Dr's have so far been unable to confirm the exact cause. The belief is that her 'insides' are contracting in the same way that her vascular system does and we are on our 4th different medication to try to slow down if not prevent this from happening and causing her such pain. We just doubled the dose on her latest one which is a heavy duty anti-seizure medication and again we have our fingers crossed for some relief for our tough little monkey!
Her kidney function is holding its own, its not fantastic, but it's not horrible either...so it's a situation that we will just keep watching and waiting which with her is sometimes all we can do...we continue to struggle with her blood pressure and heart rate, but that will likely be a life long issue unfortunately and we are all doing our best to keep it as under control as we can to minimize and slow down further damage to her arteries and to her heart and to possibly prevent future strokes.
She will also possibly require another eye surgery in the near future, but we will keep you posted!
2016 Update: Brooklyn continues to struggle daily with chronic stomach pain, we have yet to find a solution to this, but we are working hard and have tried numerous different tactics.Brooklyn suffered her first grand mal seizure this past year, as well as a few "absentile" seizures (petite grand mal) and was placed on anti-seizure medication, we are watching closely for future seizures. She has also had an increase in her migraines the past year as well. We recently discovered that Brooklyn has a hernia and has developed inflamed lymph nodes around both her liver and pancreas and is still undergoing more test to determine the cause and next steps for these. She had about 5 hospital admissions over the fall/winter for numerous reasons and was happy about it, she is starting to realize as she gets older that this is not a fun thing to do.
To us Brooklyn is not a child with PHACES… to us she is just our HERO.