A letter from a loving father...
Hi Dr Warf
My name is David Germon, the reason that I am e-mailing you is that my wife and I welcomed our baby Lydia into the world on October 24 2015. She was born with Dandy-Walker variant and hydrocephalus, she had 10 neuro-surgeries not long after birth and currently has a VP shunt in place. I have just this morning discovered your remarkable work with children suffering with hydrocephalus. Lydia has spent about half of her life in hospital so far with her Mum, though she has been home with us for a few months now. She did go back into the hospital a couple of weeks ago with the doctors believing that her shunt had malfunctioned or blocked (which a previous shunt had done and had to be replaced). As it turned out the shunt was still working but the volume of CSF was too much for the peritoneal cavity to absorb.
At the time the paediatric intensive care consultant drained some of the excess CSF from Lydia’s shunt at the head via the tap and also drained the CSF that was causing problems in the peritoneal cavity via a catheter which was inserted through her tummy. After relieving her tension the neuro-surgeon and PICU consultant sat us both down and explained that there was “nothing further that can be done for Lydia surgically”, their expectancy is that Lydia will eventually “fill up “again and we can only “make her comfortable” and watch until the worst happens.
Throughout this whole experience I am afraid the doctors have never seemed to provide much hope or positivity. My wife and I are both Christian and I’m one of the leaders of a church here in Wales. These last few days we have felt a burden to pray for a cure/solution to hydrocephalus worldwide not only for Lydia but also having seen its devastating effects for so many other parents and children. Then after some searching online I seem to have almost accidentally stumbled across your work and after I read your testimony on the Boston children’s hospital website regarding your own faith I honestly felt that God was guiding me, particularly after we have been so marginalised by the medical staff here in the UK due to our faith.
Anyway, considering all of the above I felt that I needed to e-mail you especially as I have not been able to find any information about an endoscopic third ventriculostomy being performed in the UK. As to what next step could be taken, to be honest I am not sure. However as you can imagine I will do absolutely anything necessary to have Lydia treated. When I am not working for the church I work for an airline which flies to Boston so if we can get medical clearance I am happy to fly to Boston with her or I can arrange a flight to England for anyone that could possibly help her in anyway. If you or maybe somebody on your team can come you are welcome at our home or I will book any hotel you prefer. If mountains must be moved, then by faith they shall move! Failing that could you please send me any information you have of this procedure being performed anywhere in the UK.
We are trusting in God as I believe he has installed me as the man of faith over Lydia but her belly is now beginning to swell again with the volume of CSF and we are getting desperate
Thank you for your incredible work - it is a true blessing from God.
Hope to hear from you soon