Your stories

Hydrocephalus Awareness Week - Lincoln

12th February 2020

 

Lincoln's Story...

Hydrocephalus is not predictable -
take each day as it comes.

Lincoln was born on the 21st June 2019, he was 9 weeks premature due to my placenta blood flow being low. He was a tiny 2lb 9 when born and after a good first week things started going downhill... he had meningitis and a bleed in his brain which then caused his hydrocephalus.

We were transferred to Sheffield which was scary as our local hospital was tiny and to go from that to Sheffield Children’s Hospital was so different.

As Lincoln was so tiny he had to wait a long time until he was big enough for a shunt. He had a few operations to help with the fluid draining but he contracted meningitis again and was quite poorly.

Eventually, after 9 weeks of being in hospital and 2 and a half hours away from our house, we were finally allowed to go home for him to put on more weight ready for his shunt operation.

After what seems like a lifetime of waiting he was big enough for his shunt. We spent a couple of days in hospital as he recovered from the operation.... 2 months later his shunt blocked and we had to be rushed to Sheffield for him to have a new one put in.

His second shunt got infected in November last year and we had to spend 3 weeks in Sheffield with an EVD - this was so hard for me and his dad as we weren’t able to just pick him up when he was in pain or upset.

Being so close to Christmas and his dad having to go to work meant I found it very difficult to be in the hospital a week before Christmas being so far from home.

Thankfully he managed to get his new shunt in before Christmas and we were able to be home for our first Christmas as a family!

Lincoln is 8 months old now and has gone through 9 operations, he is an absolute hero and is so happy considering what he’s been through.

 

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