Lydia's story so far... a letter to our prime minister


Dear Mr Cameron,

I am trying to get some help. I've never written our story before, I'm usually very private but I think the UK need to be made aware of whats been going on and if our information can save just one other life then it will all be worth it.   My daughter was born in Swansea in Oct 2015 with a neurological condition called Dandy walker variant. I was made aware of this when I was 20 weeks pregnant and the pressure of abortion was huge. It was a very stressful time but no one could tell us exactly what the outcome would be for our baby. We are Christians so for us there wasn't a decision to be made.  At 36 weeks and 3 days my waters broke and I was sent to hospital to be checked, by 36 weeks and 5 days our beautiful daughter had arrived. Lydia's head was exceptionally large and as a result of 5 days observation Lydia was transported to Cardiff  where she has had a shunt fitted. The night before the initial surgery a neurosurgeon came to Lydia's room and warned me not to proceed with the surgery as she was too vulnerable and could do with going home for a few months to gain weight and get some reserve on her. The next morning a group of neurosurgeons came and said that was rubbish and it was in Lydia's best interest to have a shunt fitted and the other guy didn't know what he was talking about. We were sent home 5 days after surgery. We had 8 days at home some at the hospital for check ups and one with a neurologist who said that by the time Lydia was 6 years  old she could be catching up with her fellow peers in school. All went well then she had the stitches and dressing removed at home. The very next morning her head started leaking CSF (cerebral spinal fluid)  She was sent to Swansea in an ambulance and then onto Cardiff where the Shunt was changed from a high pressure value to a medium flow. Her head still went on leaking. After a week they decided to change the shunt to a low pressure valve to drain as much pressure off her head into her abdomen cavity. After 3 weeks and daily reviews Lydia's head was still leaking, some days half a litre a day! The surgeons then decided to remove the shunt and told us we'd be home in a few days. It... still... leaked... After 5 weeks (9th Dec) of Lydia's head still leaking she contracted meningitis/sepsis. I was then asked if I wanted to let Lydia go with dignity or fight for her life. My response, as any mothers would be, was to save her life. Crying and exceptionally upset I was then told by the intensive care consultant: "I don't know why your surprised this has happened you were offered a termination during pregnancy"  After a few hours of begging the Dr's to do all they could they decided to go ahead and treat her with an external drain where the fluid when off into a bag outside of the head to let the original wound heal. Something that she should have had on the first day arriving in Cardiff! I was told she wouldn't survive, She survived.  Christmas eve we were out of intensive care on back on the ward :-) Lydia was having severe morphine withdrawals. After 2 weeks of being dependant on morphine its hardly surprising.  The said she'd be fine, she wasn't. They refused to give her a morphine withdrawal plan and let her go on without a plan in place. Lydia started to deteriorate quickly and feeding was almost impossible. Her external drain had blocked and her heart rate and breathing were showing signs of death. Lydia had to go to theatre again for a new external drain. This time after theatre she ending back up intensive care. She had had an MRI scan too. By this time Lydia had developed Hydrocephalus (water on the brain) The MRI also revealed Lydia had been having morphine withdrawals to the point that they had given her seizures. Therefore the external drain tube had blocked.  On new years eve another external drain blocked and we were given 48hrs to say our goodbyes as they didn't recommend and were very reluctant to send her for more theatre. We decided we wanted to fight for her and send her for surgery. Where there is life there is hope! Lydia again pulled through.  Slowly gaining weight and progressing. A few weeks past and the Doctors asked what we wanted to happen. We asked for her shunt to be internalised the neurosurgeons were again not happy to do it. However if they didn't she would never leave the hospital as she needs a drain from her head and couldn't leave the hospital with an external one.  They agreed and did the procedure. We've been home since March and have had 2 visits back to the hospital due to urine infections. On our last trip we were told that Lydia's stomach cavity was not capable of absorbing the excessive amount of CSF her head was producing and there was nothing more they could do for her. Lydia is now under palliative care.  Last Friday my husband by accident discovered a Neurosurgeon from Boston called Benjamin Warf and the work he has done in Uganda. He was won a MacArthur Genius grant. Mr Warf  has pioneered an alternative, low-cost treatment. In carefully designed clinical trials, he demonstrated that a relatively straightforward, one-time treatment using modern endoscopic techniques. Results in outcomes that are at least as safe and effective as ventricular shunts, but requires far less medical infrastructure and post-surgical maintenance. He is also working on a training program and network for neurosurgeons throughout Africa, Asia, and the Middle East, increasing exponentially the number of children who can now be treated using his method. He has returned to practising paediatric neurosurgery in the United States, and is now working to expand worldwide knowledge of and access to his hydrocephalus treatment. We contacted Mr Warf and he responded back within a few hours. He has stated that Lydia has never required a shunt to begin with and that his new technique would be enough for the shunt to be removed. He's also said that he's never come across a case of hydrocephalus that cant be cured one way or another. Unfortunately Lydia has gone through all of the above for nothing and risked her life serveral times as a result.  We have gone back to our consultants and they are happy to clear Lydia to fly to Boston for this treatment, however even though this technique has saved thousands of lives around the world because of EU and UK regulations it cannot be done in this country because there's "not enough science behind it" whatever that means.  We are trying our hardest to raise at least £50,000 if not more to get to Boston as Mr Warf is very happy and keen to treat Lydia. I would like the chance for our story to be shared and to campaign that the techniques that are used in 3rd world countries to save thousands of lives (as well as thousands of pounds) are brought to the UK and are used so that there is hope out there for other families like mine. This technique has proven to be more cost effective and saving a lot of traumas and its one off surgery. 

Our website is www.littlelydia.co.uk 

My telephone number is 07868006374

I would really look forward to hearing from you.  Thank you for your time.

Bethan Germon