I never fully dilated and Zak was stuck. After the ventous, forceps, another ventous
and a whole lot of pushing, I managed to get his head out, but then he got stuck again.
The cord was round his neck twice and he had shoulder dystocia. With a bit more help
Zak finally made an appearance. He was blue and floppy and never made a sound. He
didn’t breathe for over nine minutes at which time he was put on a ventilator. This is
where the fun began. Within an hour of being born, Zak started fitting. With a cocktail of
drugs he settled and was in his own fishbowl world for the next five days. When we left
hospital five weeks later, we knew Zak had suffered brain damage. They called it
hypoxic ischemic encephalopathy grade 2, but what that meant for his future, we would
just have to wait and see.
When Zak was just 3 months old, he started to show signs that things were just not
quite right. He had very strange movements, still had not smiled, could not track or
follow with his eyes and arched his back almost constantly. We were given the
devastating news that Zak has severe spastic quadriplegic cerebral palsy. As hard as
this was to accept, we didn’t know that this was just the tip of the iceberg.
Everything took a new twist when at 4 months old Zak started to have sudden spasms.
They either hurt or scared him, we were never sure which, but they made him cry. As
the numbers increased, he was sent for an EEG. The results showed an abnormal
reading but there was nothing conclusive. Then over the next 4 months, these
individual spasms started to come in clusters of around 30 spasms, 8 to 10 times a day.
A repeat EEG was done and revealed a hypsarrythmic pattern, confirming the
neurologists fear that Zak had West syndrome (infantile spasms). He was admitted to
hospital and put on a 3 week course of prednisalone. It did what we wanted it to
do……for a while. 10 days after he stopped the steroids, the spasms returned, only this
time they were worse. He was put on Epilim and we held our breath. Again, the spasms
improved, dropping in frequency. We sailed along like this for a few months, and then
on Christmas day Zak had a surprise gift we could have lived without. He had his first
tonic seizure. Yet again he was admitted to hospital to be weaned on to vigabatrin. After
3 weeks he just seemed to get worse and lost the ability to suck from a bottle. We
persevered, but in April ’08 had to admit defeat and Zak was given a gastrostomy.
Between that Christmas and June ’08, Zak had lots of seizures. Tonic and infantile
spasms, but we noticed that they were changing again. His infantile spasms were no
longer coming in clusters. Instead he would have the jerk followed by an absence of
some sort. Then he decided to throw a tonic clonic in to the mix. On this occasion he
was admitted for observation and a repeat EEG. The hypsarrythmia that had always
been there, had gone. For a brief second we were relieved. Then they told us that in its
place was a highly abnormal reading with a slow spike and wave pattern. This combined
with the tonic, tonic-clonic, myoclonic and absence seizures and the fact that Zak has
never developed past a 1 month old level, meant that Zak was showing very strong
signs of having Lenno Gastaut Syndrome.
He is now 19 months old. He is on Epilim and Lamotrige. He has around 40 myoclonic
seizures and 1 tonic seizure most days. We have been increasing the dose of
Lamotrigine for a while, and is almost on full dose. I guess we will again have to wait
and see if any of this helps.
A future with LGS is extremely scary. But we have made it this far, and with the help
and support of friends, family and our amazing team of doctors and therapists, I know
that Zak will have the best of everything we can give him.
and a whole lot of pushing, I managed to get his head out, but then he got stuck again.
The cord was round his neck twice and he had shoulder dystocia. With a bit more help
Zak finally made an appearance. He was blue and floppy and never made a sound. He
didn’t breathe for over nine minutes at which time he was put on a ventilator. This is
where the fun began. Within an hour of being born, Zak started fitting. With a cocktail of
drugs he settled and was in his own fishbowl world for the next five days. When we left
hospital five weeks later, we knew Zak had suffered brain damage. They called it
hypoxic ischemic encephalopathy grade 2, but what that meant for his future, we would
just have to wait and see.
When Zak was just 3 months old, he started to show signs that things were just not
quite right. He had very strange movements, still had not smiled, could not track or
follow with his eyes and arched his back almost constantly. We were given the
devastating news that Zak has severe spastic quadriplegic cerebral palsy. As hard as
this was to accept, we didn’t know that this was just the tip of the iceberg.
Everything took a new twist when at 4 months old Zak started to have sudden spasms.
They either hurt or scared him, we were never sure which, but they made him cry. As
the numbers increased, he was sent for an EEG. The results showed an abnormal
reading but there was nothing conclusive. Then over the next 4 months, these
individual spasms started to come in clusters of around 30 spasms, 8 to 10 times a day.
A repeat EEG was done and revealed a hypsarrythmic pattern, confirming the
neurologists fear that Zak had West syndrome (infantile spasms). He was admitted to
hospital and put on a 3 week course of prednisalone. It did what we wanted it to
do……for a while. 10 days after he stopped the steroids, the spasms returned, only this
time they were worse. He was put on Epilim and we held our breath. Again, the spasms
improved, dropping in frequency. We sailed along like this for a few months, and then
on Christmas day Zak had a surprise gift we could have lived without. He had his first
tonic seizure. Yet again he was admitted to hospital to be weaned on to vigabatrin. After
3 weeks he just seemed to get worse and lost the ability to suck from a bottle. We
persevered, but in April ’08 had to admit defeat and Zak was given a gastrostomy.
Between that Christmas and June ’08, Zak had lots of seizures. Tonic and infantile
spasms, but we noticed that they were changing again. His infantile spasms were no
longer coming in clusters. Instead he would have the jerk followed by an absence of
some sort. Then he decided to throw a tonic clonic in to the mix. On this occasion he
was admitted for observation and a repeat EEG. The hypsarrythmia that had always
been there, had gone. For a brief second we were relieved. Then they told us that in its
place was a highly abnormal reading with a slow spike and wave pattern. This combined
with the tonic, tonic-clonic, myoclonic and absence seizures and the fact that Zak has
never developed past a 1 month old level, meant that Zak was showing very strong
signs of having Lenno Gastaut Syndrome.
He is now 19 months old. He is on Epilim and Lamotrige. He has around 40 myoclonic
seizures and 1 tonic seizure most days. We have been increasing the dose of
Lamotrigine for a while, and is almost on full dose. I guess we will again have to wait
and see if any of this helps.
A future with LGS is extremely scary. But we have made it this far, and with the help
and support of friends, family and our amazing team of doctors and therapists, I know
that Zak will have the best of everything we can give him.
Zak David Hall was born on St George’s day (April 23)
2007. After 8 long years trying to fall pregnant, we were
so excited that our daughter Ashleigh was going to have
a little brother. The pregnancy was uneventful, just the
normal morning sickness and needing to pee constantly.
Because of complications with my daughter’s delivery, I
was induced the day after my EDD. Everything
progressed quickly but normally until an hour before Zak
crashed into the world. Suddenly my labour went in to
overdrive. Everything sped up and was in full throttle
except for Zak.
2007. After 8 long years trying to fall pregnant, we were
so excited that our daughter Ashleigh was going to have
a little brother. The pregnancy was uneventful, just the
normal morning sickness and needing to pee constantly.
Because of complications with my daughter’s delivery, I
was induced the day after my EDD. Everything
progressed quickly but normally until an hour before Zak
crashed into the world. Suddenly my labour went in to
overdrive. Everything sped up and was in full throttle
except for Zak.
