Poppy was born on 24 April 2007 by elective caesarian. She was born with myelomeningocele spina bifida and bilateral talipes (two club feet). When she was two days old she had the opening in her back closed. After having her back closed, her legs were put into thigh length casts to try and correct her talipes. We wouldn't know the full extent of her nerve damage for some time, what we did know was that she had a neuropathic bladder and would need catheterised at least 5 times daily. For now though we could take out baby girl home.
We were home for around four weeks when we noticed Poppy's head was starting to swell. From talks with her doctors we knew this was the Hydrocephalus taking full effect. She was taken into hospital and had a VP shunt put in to control the fluid around her brain. After a week we set off for home again.
We were home for a couple of weeks when we noticed her 'noisy breathing' (stridor being the technical term). Around the same time she also became ill with temperatures and vomitting. Again she was admitted to hospital to be treated for what we thought was just a urine infection.
While being treated for her urine infection Poppy's Neurosurgeon wanted to investigate the cause of her stridor so arranged for her to have an MRI. That MRI was to throw myself, my husband and Poppy into a lengthy hospital stay.
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This picture was taken the day Poppy was admitted with a urine infection.
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The results of Poppys MRI showed that she was suffering from a condition called Type II Arnold Chiari Malformation and needed surgery right away. However a subsequent ultrasound showed that she also had a clot on the left side of her brain that needed to be removed before she could have surgery for the Chiari. Sitting down with her Neurosurgeon to discuss the risks and benefits of surgery is all a blur really. All I remember is "1 in 5 chance of surviving surgery alone", "bring your family up to say their goodbyes", "perhaps you should have her blessed".
We did all of this.. even when I think about it now it all seems dream like. Like it wasn't actually happening. I think it was at this moment that my body and mind found the 'auto-pilot' button. Thankfully she survived the operation, but she continued to have breathing difficulties and there were many moments when we thought 'this is it..' Eventually it was decided that the best thing for her would be to do a tracheotomy.
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Poppy after her tracheotomy
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After a long, frightening and emotional 4 months in hospital we finally brought our little girl home again. She's now five years old and in school. She has no sensation or movement from her hips down so uses a wheelchair to get around. Just before starting nursery aged 2 1/2 she had her first seizure and after some time was diagnosed with epilepsy. Ive probably missed out a few things that have happened in the last 5 years. They've be pretty busy and hectic! Many hospital appointments and the birth of our third daughter! She's given us many scares up to this point but not nearly as many as the happy and fun times she has given us.
Apologies for the 'not so brief' history.
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