"The Early Days"

Belinda went into labour the morning of 16th December 1993. Our little girl was born 2.04pm. We were so ecstatically happy. But why were they not giving her back to us; instead more nurses kept appearing then more doctors all working frantically. Eventually she was handed to us with a tube down her throat with the words "she has no ear lobes" She was then whisked away to ICU.

After 1.5 hours we were asked if we wanted to see Eve. At no time had we been worried because no one had explained anything to us. We think we must both have being in a state of unbelieving shock.

Upon seeing Eve she was a jumble of tubes and wires. It was at this stage we were told she had Treacher Collins syndrome; actually diagnosed by a junior doctor. We did not know then, but none of the consultants had any idea of, or how to deal with, the condition. The tubes and the ventilator were there to help her breathe as she couldn't manage on her own we were told. That night we experienced our first crisis when Eve's tube became blocked and trying to reintubate was proving extremely difficult. We were asked if we would like her christened .This is when Belinda came up with Eve's name (later we found that girls named this were meant to be long lived - the name had never even crossed our minds before.!!!) A consultant was called out, who turned out to be John Puntiss. He succeeded in reintubating - first crisis over. (John still sees Eve on a regular basis even though professionally he should no longer have anything to do with her.) A tracheostomy was never mentioned. We now though this was because there were no ENT pediatricians at Leeds General Infirmary. Instead, owing to its status as a teaching hospital, numerous other futile attempts were made to keep Eve breathing. At no point was it mentioned her care might be better maintained at any other hospital where relevant surgeons/staff had much more experience of this type of case. You have to imagine at this stage we still had the belief that the doctors knew what they were doing; this was the impression they conveyed.

After 3 weeks of intensive care and being told her jaw may grow sufficiently to clear her airway it was suggested by one particular plastic surgeon we should try having her palate split in an effort to increase airway. We agreed. Looking back we can hardly believe someone would come up with such a ridiculous idea. Eve needed a trachy and should have had one straight away. After this failed attempt and many other vain ideas where Eve's airway care was badly mismanaged, we lost count of the number of resuscitations performed.

Eventually a tracheostomy was mentioned and performed at 6 weeks old. This was done by a surgeon who had never performed the procedure on one so young (see previous note about lack of pediatric ENT surgeons.). We had found out about such a surgeon in Manchester who had a particular interest in Treacher Collins and had stated we wanted her transferring. On the following day, however, Daniel (our eldest) was very ill (it turned out to be chickenpox) and I stayed at home with him whilst Belinda went top the hospital. Here she was reassured everything would still be okay in Leeds and we should postpone the idea of transferring. As it happened we also found out this surgeon in Manchester was also going on holiday that week. We stayed with the Leeds "professionals" The trachy was promised for that very next day if we stayed. Under all the circumstances we agreed.

Monday the op was performed and Eve came back looking the best she had ever looked as far as colour and lack of tubes. It was wonderful to have a clear view of her lovely little face at last. All was well for 30 mins when disaster struck. We still do not know what happened exactly, but we were asked to leave the room. Belinda stayed and experienced the sight of air going everywhere except to her lungs - the trachy had somehow become inoperable. The ENT surgeon had already left the hospital, despite Eve being the first young child he had performed the op on. A general surgeon was called up from the operating theatre and he managed to open an airway, saving her life (this Mark Stringer still, to this day, says most of his grey hairs were caused by Eve.)

This whole period existed for 3/4 hour where it was uncertain as to how much oxygen Eve had being receiving . We were told to expect the worst; with regards to oxygen starvation.  Eve, being Eve, was fighting the sedation and paralysing drugs within a week. Within 2 weeks she was  our little girl again. Ever since she has fought with the same strength whatever has been thrown at her.  It is amazing to think that despite all her near brushes with death - literally - and her very near receipt of brain damage she is today a vibrant, ebullient, energetic individual with her wits very much about her.  We are not religious people, but we certainly think that someone was "looking after Eve" and she was meant to be here for the greater good of all.

~Michael and Belinda