We drove to Brisbane for the MRI and it wasn't a fun trip, it was pouring rain and the rivers and creeks were raising but we had to get through and luckily we made it (it also happened to be the worst floods Brisbane had experienced). We rang to confirm our appointment and I think they were about to cancel it until we told them we drove all this way. We later found out we were the only appointment that day, the remainder got rescheduled due to the floods. We got there early as usual. Faith had to be put under a general anesthetic and the scan was going to take a couple of hours at least. She was going to be taken to the babies ward afterwards to ensure she recovered ok. If everything went ok we were free to take her back to our hotel. We had to stay nearby for one night as a precaution. Half way through the MRI the power went out as the flood waters were rising. We panicked as Faith was inside the MRI machine. A nurse came out and said that she is fine, they have a generator but the MRI machine did go off line and they would have to reboot it so we had to wait even longer. Faith was under an anesthetic for a lot longer than should have been. She came out and was so hungry. We took her upstairs to the babies ward and gave her a big feed. With no problems from the anesthetic we returned to our hotel.
that day we received a telephone call from a rather concerned
neurosurgeon. He explained that he was the on call registrar and that he
had been asked to review the MRI report as they had found an extremely
large syrinx. A syrinx? We didn't even know what that was.
It is a abnormal fluid-filled space found within the spinal cord. It is
often found in children with spina bifida myelomeningocele. This is
what Faith has. We were not sure what this meant. He said that our
neurosurgeon wasn't on call so he would talk to the one that was and
would call back early the next morning. He said that if an adult had a
syrinx that big then they would operate in the not to distance future.
Was this the answer that we needed? It this why Faith was having so much
trouble. We didn't know. We just had to wait.
morning dragged on until we got a call from the neurosurgeon registrar
and he said that we would need to come back and see our own consultant
neurosurgeon. He said that a syrinx can either symptomatic or asymptomatic.
We were thinking, well it's obvious that it is symptomatic. Faith was starting to go numb in her legs and didn't respond anymore to touch. With the floods continuing to rise we couldn't stay in Brisbane any
longer and with the appointment with our own neurosurgeon a little way away, we went
home. Life at home wasn't easy, the mornings dragged out with Faith so
chronically sick and not much being done. We pushed for appointments to
be brought forward but didn't have much success.
After some research we
believed the syrinx to be the cause of this pain and it appeared the
arnold chiari ii malformation was also symptomatic and it needed to be addressed. We just
couldn't make the doctors believe it. We were told we just had to wait for our appointments. We'd spend every day with a very sick baby and we struggled with knowing what to do. Our hearts were heavy and anxious with worry. The days all felt dark. There was no rest for any of us. Faith had been up most of the night in distress and with focal seizures continuing we gave her some midazolam. We had never tried this before and her breathing slowed and she was asleep. We raced her as fast as we could to the local hospital and we were taken straight in. Of course, this woke her up and after being monitored for several hours she was fine. Faith has a strange temperature control as well, so half her body would feel ice cold and the other would be hot. Because of that taking her temperature was a challenge. When they did her temperature it was high and so on that they admitted her. We protested and explained this does happen with her. At last, our own paediatrician agreed to let us take her home but leave her admitted and come back if there are any problems.
That night she seemed ok but the next morning again she had a temperature on top of the morning seizures, sweating, pulling up legs and jerking them. Our local hospital promised to talk to the neurologists but never did so we left very early in the morning and presented to the Brisbane hospital. Faith was admitted straight away and it turned out that in the previous 24hours she had picked up a gastro bug. So we were isolated as well. We spoke to the neurologists and they said the best thing is for them to film her so they could see what is happening with the seizures. This also gave us a chance to get the neurosurgeons to come and talk to us about the MRI report as our appointment was still a couple of weeks off. We spoke with the consultant neurosurgeon and he said, yes it was a syrinx and it was one of the largest he has seen and there was a lot of built up pressure in the brain from the arnold chiari ii malformation but unless symptomatic there was nothing they would do at this stage. We couldn't believe he was serious in what he was saying, can't you see our little baby and how she is suffering but he was putting that down to the neurologists to deal with. He said that if the neurologist said that Faith was symptomatic with the syrinx and arnold chiari ii then they would act but not until then.
The seizures were filmed and they did see what we were talking about and they were not seizures, wow, we couldn't believe it, what were we going to? Astonished. They said of course it wasn't normal but it wasn't seizures. If this wasn't seizure activity what is causing Faith's foot to twitch and the sweating, the hot and cold temperature, the vomiting, the pulling up of the legs and the jerking movement. What was it then?