Funding a film about a feared disease.
16 November 2017
In July, I went to see Dr Minesh Khashu about creating this website. It was something we had wanted to do for some time, and we met in a café beside Poole’s stunning harbour. The sea was calm, but an extraordinary battle was raging in public over the life of one baby, and a few hours earlier the President of the Royal College of Paediatrics and Child Health had issued a statement on a case that the Pope and the President of the United States of America had already felt they should comment on. Professor Neena Modi, a neonatologist, had said “situations that involve withdrawing life-sustaining treatment are not uncommon and fall within the responsibilities of many paediatricians”.
As a mother who was forced, in partnership with a neonatologist, to decide when to turn off the ventilator keeping my longed-for son alive, I know how excruciating it is to have to let go of a child and your hopes for your future together. I also know such situations are not uncommon with necrotizing enterocolitis, and that the disease can progress so quickly that it is hard to find time to update other members of the family, never mind consult lawyers or catch the eye of a president addicted to Twitter.
There is much more information available on NEC now than there was when my son died, but if parents of a baby suspected of having the disease venture on to the internet they will quickly realise how devastating it can be. Devastating is not a description I have just come up with; like feared, dreaded, overwhelming, lethal and catastrophic, it was used by professionals in research papers and on websites I read while working with Dr Khashu to provide information on here that families could use to better understand the complexity of NEC and the limited options available to diagnose and treat it.
One of those papers, a UK-wide study of surgical necrotizing enterocolitis, was presented at SIGNEC 2017 by Dr Amit Gupta of Oxford University Hospitals. He and his co-authors state that “It is also exceptionally difficult to accurately counsel parents of infants with NEC”.
Which is precisely why Dr Khashu and I have put lots of information on this site that is intended to help parents to make informed choices. We have broken it down into a quick guide and detailed sections, but we know we need lots more visual information and are eager to provide families with an animated film about NEC.
Most parents of babies currently being cared for in neonatal units can’t remember much about life before mobile phones and the internet. When they want to know or buy something, they expect to be able to go online and to have their needs met swiftly and in ways that are visually rewarding.
Added to these expectations are the heavy demands that having a sick baby places on parents’ mental faculties, especially mothers recovering from giving birth. Guilty, clueless, terrified, traumatized, stressed are descriptions I have seen used time and again by mothers visiting forums devoted to premature birth and baby loss.
As the daughter of a man who died of burns as well as the mother of a baby who died of NEC, I know how difficult it is to get the brain to function when it is under assault from all the stimulators in an intensive care unit; when it is busy interpreting the signals health professionals send out with their bodies as well as trying to comprehend what they are saying, and when all the while a loved-one is fighting to stay alive.
I found it so hard to get my head around the fact that surgeons operate on babies who weigh less than a packet a sugar, and that they cut and sew back together tiny bowels that were supposed to have matured for weeks more inside their mums. But they do, and I want parents who have to grasp and give their consent to this in future to be able to come to this site to watch a film or to read about NEC.
Guided by the professionals caring for their babies to come here, we hope they will be helped to understand this serious, and possibly unique, condition and the options that may be available. We hope we can help professionals and parents to work together for the best interests of some very fragile babies.
All the money raised from this appeal will go towards the cost of the film and any additional funds will be used to improve this website for professionals and families.
Thank you for any donations and help you are able to give.
Mother of Guy Gill Ferguson, 16-24 February 2007
Parent & SIGNEC website editor
Dr Minesh Khashu
It is also exceptionally difficult to accurately counsel parents of infants with NEC.