My Story:

Keira Saunders

Born 23rd May 2005 - 6 days overdue - our first born arrived, a little girl after a normal non-eventual labour. We knew that we were to stay in the high dependency unit, so Keira could undergo some tests after abnormalities were noted on the 20 week anatomy scan - stomach on the opposite side to normal, possible bowel malrotation & polysplenia.

In her first 7 days of life, she had an abdominal ultrasound, heart scan, barium meal x-ray & numerous blood tests. The tests confirmed that her stomach was on the wrong side, she did have a malrotated bowel, polysplenia & a heart abnormality - all of which functioned relatively normally. She was also jaundice & her stools quite pale although her bilirubin was not particularly high for a newborn.

On her 8th day of life, 1st June 2005, she underwent surgery under the suspicion that she had extra-hepatic Biliary Atresia - we were told that if the surgery went over three hours that this would be the case - it lastest 6 hours. Unlike most cases she did not undergo any testing to confirm this suspicion because of her bowel malrotation & the schedule of the surgeons (two of which performed the surgery) we had about 12 hours notice of her impending surgery.

She stayed in hospital for four weeks; left with a NG tube in her nose, having bolus feeds three hourly & continuous night feeds of Pepti Jnr. Weight gain was the major hurdle for us over her first year of life, she had a Mickey button surgically inserted at 6 months of age in November 2005 - this was the best & worse thing, as leaking was a major problem, however although it was often a slow process in the end her weight improved & she was able to manage on her own. The Mickey button was removed just after her little brother was born November 2007.

After the first 4 week stay in hospital other than for the Mickey button insertion & removal - Keira only had about three stays in hospital all of which happened in early 2006. From the initial weekly clinic visits at Starship & bloods, visits progressed to fortnightly, monthly & now we are in the unbelievable position of having 6 monthly visits to Starship for clinics & bloods. Her liver bloods are not normal however her bilirubin sits around 20 (under 20 is considered normal) & her other bloods are stable - which is positive as these may never be normal.

She is not unlike any other chatty, energetic, bubbly, happy four year old girl - who loves her family, friends & is looking forward to starting school next year. Who knows what the future holds for her but we are keeping the focus on & enjoying today - we will worry about the future if and when it happens.