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On the afternoon of February 3rd 2014 our gorgeous baby girl was born, Skye-amor arrived kicking and screaming much to the delight of everyone concerned,but most of all we (mum & dad) could breath a sigh of relief

From very early on in the pregnancy there had been umpteen different opinions and diagnoses from our baby being heavily disfigured, to the pregnancy not lasting the full duration. Well I can assure you although slightly biased a more perfect looking baby girl you couldn't find.

So Skye-amor had proved the professional opinions wrong. There had been many different chromosomal diagnoses which all proved negative after a amniocentesis, Our final prenatal diagnoses at eight months which is believed to be a genetic disorder was Megacystis microcolon intestinal hypoperistalsis syndrome, (MMIHS) or Berdon syndrome after the man who discovered it in 1976.

From its discovery until 2011 only 227 reported cases exist with nearly 3/4 of these being baby girls. Our gorgeous baby girl had one of the worlds rarest and least understood syndromes, with a prognoses that would break the heart of any parent. We had no idea whether we would have her for an hour a day a week, but we both agreed that whatever time we were fortunate to spend with our beautiful girl we wanted her to know nothing but love, cuddles and a life without pain.

Skye-amor was immediately rushed of to the neonatal intensive care unit at the John Radcliffe Hospital which is a state of the art custom built and equipped unit. (which we have already raised funds for through a different giving page)  After undergoing surgery for her exomphalos and an investigatory look at her major urinal and gastric organs a stoma was fitted at eighty centimetres down her small intestine.

Amazingly after only a week in the ICU Skye-amor was moved to Tom's Ward which is part of the Children's hospital. With the same team of surgeons and a leading gastroenterologist all sorts of different methods were attempted to get Skye-amor to accept and absorb food but to no avail, MMIHS was the official diagnosis. There is very little known about this syndrome but it affects the smooth muscle within the urinal and gastric tracks not allowing the process of  peristalsis to take place which is the wave like movement we all take for granted regulating the speed and movement of food through our body. 

This left us with the most difficult and  unnatural of decisions and as we struggled with it, Skye-amor had a bacterial infection causing her pain we promised she would never experience. Skye-amor had made the decision for us and we took her home on a carefully planned palliative care programme spending her last thirteen days with her family.

Those thirteen days although heartbreaking contained treasured memories that shall live long in our hearts. Skye-amor was lucky enough to have received the attention and care of some amazing health care professionals and this page is to help raise money for all the different departments as our way of thanking them.

The following are part of the John Radcliffe Hospital 

Neonatal intensive care unit.

Tom's Ward (children's ward)

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