Emmea12uk
The Folic acid police!
- Joined
- Mar 29, 2008
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Just a quick update on little Tommy for those who are interested and followed our story through pregnancy.
Firstly, Tom was diagnosed with Spina Bifida and Hydrocephelas at my 20 weeks scan and was born with a hole in the base of his spine which leaked spinal fluid. It was not clear whether there was any nerve damage to him below the waist but it was 90% likely.
He has an operation to close the hole at birth and an operation to insert a drain (shunt) into his head to get rid of excess cerebal-spinal fluid from his brain at two weeks old.
We just had our first check up with the neurosurgeons post op on his shunt and everything looks good at the moment! The shunt appears to be working well. We have to go back for an MRI scan when he is one year old to make sure there are no other brain conditions as they say babies with abnormalities usually have more than one defect. He will have to have a general anaethetic tho as he prob wont keep still
He also has had a full physio check and movement is excellant! He is kicking and doing all the normal movements but seems a little stiff in one leg - but hopefully a good exercise routine will cure that! Fingers crossed, there is no indications that he wont grow into a normal toddler.
I have to wait until december to have his bowels and bladder tested - but so far, he seems to be able to go for a pee, but not be able to empty his bladder. Which i think is good, as he can be taught how to empty it when he is older. I have to catheterise with every nappy change to prevent infection and kidney damage. His bowels seem to flow constantly most days - but this can be normal for such a young baby.
He has only just discovered his hands and isnt really using them yet - but it is still early days. The part of the brain which controls motor/coordination in Tom's brain is damaged but we wont know to what extent until he is much older. usually it just means the babies are a little slower to develop these skills.
Over all, he is doing so well! he could have had no feeling or movement from the waist down so I am sooooooo pleased!!
Firstly, Tom was diagnosed with Spina Bifida and Hydrocephelas at my 20 weeks scan and was born with a hole in the base of his spine which leaked spinal fluid. It was not clear whether there was any nerve damage to him below the waist but it was 90% likely.
He has an operation to close the hole at birth and an operation to insert a drain (shunt) into his head to get rid of excess cerebal-spinal fluid from his brain at two weeks old.
We just had our first check up with the neurosurgeons post op on his shunt and everything looks good at the moment! The shunt appears to be working well. We have to go back for an MRI scan when he is one year old to make sure there are no other brain conditions as they say babies with abnormalities usually have more than one defect. He will have to have a general anaethetic tho as he prob wont keep still
He also has had a full physio check and movement is excellant! He is kicking and doing all the normal movements but seems a little stiff in one leg - but hopefully a good exercise routine will cure that! Fingers crossed, there is no indications that he wont grow into a normal toddler.
I have to wait until december to have his bowels and bladder tested - but so far, he seems to be able to go for a pee, but not be able to empty his bladder. Which i think is good, as he can be taught how to empty it when he is older. I have to catheterise with every nappy change to prevent infection and kidney damage. His bowels seem to flow constantly most days - but this can be normal for such a young baby.
He has only just discovered his hands and isnt really using them yet - but it is still early days. The part of the brain which controls motor/coordination in Tom's brain is damaged but we wont know to what extent until he is much older. usually it just means the babies are a little slower to develop these skills.
Over all, he is doing so well! he could have had no feeling or movement from the waist down so I am sooooooo pleased!!
Fingers crossed for the MRI scan when he's one 
xx
