Mason Savin's Journey -Hydrocephalus , IVH Grade 4

Hi. My name is Anthony and my Wife is Greta. This is our son Mason! Mason also has a loving older sister called Mia.Mason was born with a IVH Grade 4 Hydrocephalus. I am sure some of you will already know a bit about our special little man! I am going to try and briefly give some information on he's condition and as to why we have started this page. I hope you can spare 5 mins to read about his journey. 



Mason was born on the 05/10/2017. Mason was to be delivered by planned C-section.

The morning came and me and my wife were anxious  , but ever so excited to meet our baby! I sat outside the theatre waiting for Greta to be prepped for the C-section. Once prepped I was asked to come and sit with Greta whilst the delivery took place! An hour had passed and finally I was asked to see our little baby! A boy!!! We were over the moon! I cut the chord with the biggest smile on my face. 

Once the procedure was complete me and Greta were sat with our little boy waiting for a bed to open up on the ward. During this time it had been arranged that I was to go with Mason to the Neo-Natal unit for a test to make sure there was no fluid on he's lungs. It was my first experience in the unit and it was quite an upsetting place to be even it was only for 30 mins. Little did I know this was all to change in the next 24 hours and it would be somewhere we would spend the next couple of months. 

The morning of the 06/10/2017 I received a call to get to the hospital as soon as I could. On arrival I was sent to the neo-natal unit. I met up with Greta who was very upset and asked the doctors if they could tell me what was going on. The doctors explained that Mason was having constant seizures due to a brain bleed. In order to try and stop the seizures he was given very strong sedatives. Different sedatives were used over a 2 week period to try and combat the seizures. Unfortunately this did not work. 

At the end of the  2 weeks we were invited to a meeting with one of the doctors. Myself , Greta any my parents all sat down with the hope they had some answers. The next 15 mins were the most painful and upsetting moments we were to experience. The doctor explained to us that in he's professional opinion nothing was working and Mason was a very poorly baby and that basically we should prepare to say goodbye to our little boy! I am not exaggerating when I say it was as blunt as that!

Later that day we were lucky to receive a call from the Birmingham Children's hospital who intervened with Mason's care. They supplied the Neo-Natal unit with a anti-seizure drug (levetiracetam -Keppra) to try on Mason. The children's hospital wanted Mason to be woken up from his sedation and for the new drug to be used. A few days went by and the new drug seemed to be controlling the seizures. Mason opened one eye and had a few finger movements. This was the most special feeling. A few days later they were able to disconnect Mason from the assisted breathing machine as he was able to breathe for the first time on he's own.

Doctors were happy that the new drug had controlled the seizures and they now wanted to tackle the excess fluid on the brain. (We even used ''Keppra'' for he's middle name as this drug saved he's life) A lumbar puncture was the first procedure they completed to release the pressure. Every morning they measured his head and unfortunately the excess fluid wasn't draining as much as they hoped. Due to the lumbar puncture being a difficult and awkward procedure they told us they would have to transfer Mason to the Birmingham Childrens hospital to put a reservoir in which would allow them to drain the fluid as often as was needed.  Again unfortunately for us this wasn't enough as the pressure was still building and the last resort was for Mason to be fitted with a Ventriculo -Peritoneal shunt. This would drain the fluid from he's brain to he's abdomen.


The surgery was a success and we were advised this would be a lifelong thing he would live with. We had a briefing regarding the shunt and the possibilities of malfunction as well as making other aware around him (Schools , Friends) of the symptoms to look out for. 

After 3 long months of living in the hospital Mason was dis-charged and able to come home for the very first time. It was an amazing feeling as at one point we were told this moment would not happen. Mason has regular appointments with different doctors and different hospitals. All of the doctors emphasise that the most important factor for Mason is Physiotherapy.

I am sorry this has taken so long to reach this point , but felt it is important to know the journey he has been on. Myself and Greta are fully aware that we don't know what the future holds for Mason as we don't know the damage that has been caused by the brain haemorrhage, Seizures, Hydrocephalus and everything else he has been through , but we just want to give him the best chance possible of a normal life.  Mason has severe delayed development. He is still yet to fully sit independently at 19 months old. Research into he's condition and the chance of a better future we came across the Adeli Medical Centre in Slovakia (https://en.adelicenter.eu

We contacted the medical centre and sent over all requested medical correspondence regarding he's condition. Mason has been approved for a 2 week intensive rehabilitation sessions at this facility on the 01/07/2019. It has been advised to us that the vital timeframe for his development is between 0 -2 years old.This doesn't leave us with much time and this is the reason we have turned to this site for people's support. Through special rehabilitation utilising the amazing plasticity of the brain at this age a severe disability in the future can be avoided.

It is too early to tell whether Mason will have the full use of he's body. Mason is entirely dependable on us as he cant really do anything for himself.  As parents we want to do all we can to ensure we give our little boy the best possible chance. 

Thank you for taking the time to read this. Your help and support will give him the chance he needs! We would be ever so grateful!!!!!!!!

xxx

Donations (0)

  • Carole Simpson 
    • £20 
    • 3 mos
  • Anonymous 
    • £15 
    • 3 mos
  • Aiste Rudamine 
    • £30 
    • 3 mos
  • Zilvinas Butkus 
    • £200 
    • 3 mos
  • Steve Newsome 
    • £25 
    • 3 mos

Organizer 

Greta Savin 
Organizer
Birmingham, West Midlands, United Kingdom
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