| MADISON LILLY-ANN CREED ON THE 24TH JANUARY 1995, MADISON LILLY-ANN CREED WAS BORN IN TOOWOOMBA BASE HOSPITAL, QUEENSLAND, AUSTRALIA. I WAS SENT TO TOOWOOMBA AS I WAS 5 WEEKS EARLY AND THE TOWN THAT WE LIVE IN (WARWICK) IS NOT EQUIPPED FOR PREMATURE BABIES. MADISON WAS BORN AT 12.37P.M. ON A TUESDAY. SHE WAS IN A HUMIDITY CRIB THE FIRST DAY OF LIFE, AND EACH DAY PROGRESSED INTO THE SPECIAL CARE NURSERY AND THEN INTO THE WELL BABY NURSERY AND THEN ON THE 4TH DAY SHE FINALLY MADE IT INTO THE ROOM WITH ME. BUT THIS GREAT DAY DIDN'T LAST LONG. MADISON WASN'T INTERESTED IN WAKING UP FOR HER FEEDS. THE NURSES ASSURED ME THAT SHE WAS JUST A BIT SLEEPY, BUT AFTER COLD WASHERS ON HER FACE AND FEET AND STILL NO RESPONSE, IT WAS DECIDED TO TAKE HER BACK TO THE NURSERY. A DOCTOR WAS CALLED AS MADISONS TEMPERATURE STARTED TO GO DOWN. THAT NIGHT I FOUND MY LITTLE GIRL UNDER A FLUORESCENT LIGHT WITH A PINK BEANIE ON TO KEEP HER WARM, AND TO MY HORROR SHE HAD A TUBE UP HER NOSE. THE DOCTORS HAD NO IDEA WHAT WAS WRONG. THAT NIGHT MY HUSBAND (JOHN) AND MY MUM (BEV) STAYED FOR SUPPORT. THE NEXT DAY WAS MUCH THE SAME WITH NO IMPROVEMENT, SO I SENT JOHN AND MUM HOME THAT NIGHT SO THEY COULD GET A DECENT SLEEP. I WAS MOVED INTO A PRIVATE ROOM, AWAY FROM ALL THE OTHER MOTHERS. THE NEXT DAY WAS THE WORST DAY OF MY LIFE. I WAS WOKEN UP BY A NURSE TELLING ME THAT I SHOULD GET MY DAUGHTER BAPTISED AS SHE WAS GOING TO DIE. I RAN TO THE NURSERY BUT WAS TOLD THEY WERE STILL WORKING ON HER AND THAT THEY WOULD COME AND GET ME WHEN I COULD SEE HER. I RANG JOHN AND MY DAD TO TELL THEM TO COME DOWN AND ALSO TO TELL THEM THE AWFUL NEWS. FINALLY I WAS ALLOWED TO SEE MY BABY GIRL AND THERE SHE WAS SPREAD OUT ON AN OPEN HUMIDITY CRIB WITH TUBES COMING OUT OF HER EVERYWHERE. ALL I COULD DO WAS CRY AND RUB HER LITTLE HAND, AS IT WAS THE ONLY PART OF HER WITHOUT A TUBE. MADISON WAS BAPTISED INFRONT OF MYSELF AND MEDICAL STAFF, AS THE DOCTOR WANTED HER AIR LIFTED TO BRISBANE IMMEDIATELY AND THERE WAS NO TIME TO WAIT FOR MY FAMILY. TO MY RELIEF JOHN, MY MUM AND DAD AND JOHNS MUM GOT THERE JUST AFTER THE BAPTISM, THEY WERE ALLOWED TO SEE HER AND THEN SHE WAS WHEELED OUT TO THE HELICOPTER. I THOUGHT THIS WOULD BE THE LAST TIME I SAW MY BABY GIRL. JOHN, HIS MUM, MY MUM AND MYSELF DROVE TO BRISBANE, WHICH IS A TWO HOUR DRIVE, THE LONGEST DRIVE OF OUR LIVES. MADISON HAD SURVIVED THE TRIP, AND WE NOW FOUND HER IN THE INTENSIVE CARE UNIT AT THE ROYAL CHILDRENS HOSPITAL BRISBANE. HERE SHE WAS AGAIN WITH EVEN MORE TUBES AND LINES ATTACHED TO HER, IF THAT WAS POSSIBLE. MADISON WAS STABLE, BUT THERE WAS STILL NO IDEA OF WHAT THE PROBLEM WAS. ALL OUR FAMILIES CAME DOWN AND STAYED WITH US THAT NIGHT, IN A SMALL PARENT LOUNGE. THE NEXT DAY SHE REMAINED THE SAME, THE DOCTORS THOUGHT IT WAS SOME SORT OF ENCEPHALITIS (SWELLING OF THE BRAIN). THEY GAVE US THE BAD NEWS THAT AFTERNOON, THAT MADISON WOULD BE TAKEN OFF LIFE SUPPORT THE NEXT MORNING. WE WERE DEVASTATED. WE HAD WHAT WE THOUGHT WOULD BE OUR ONLY FAMILY PHOTOS TAKEN THAT DAY. WE WERE GIVEN AN APARTMENT TO STAY IN AT THE BACK OF THE HOSPITAL. THE NEXT MORNING I WALKED UP TO THE HOSPITAL THINKING THIS WOULD BE THE WORST DAY OF MY LIFE. I FOUND MY MUM AND DOM (THE NURSE) SMILING. MADISON HAD OPENED ONE EYE TO HAVE A LOOK AT THEM, AND THEN WHEN I SAID HELLO TO HER, SHE OPENED BOTH EYES. SHE MUST HAVE BEEN WAITING FOR ME. BY THAT AFTERNOON SHE WAS OUT OF INTENSIVE CARE AND IN A NORMAL CHILDRENS WARD. MY MUM HAD HER FIRST NURSE OF HER FIRST GRANDCHILD. AFTER 3 WEEKS IN HOSPITAL WE WERE FINALLY ABLE TO TAKE MADISON HOME. BUT THERE WAS NEVER A PROPER DIAGNOSIS, ONLY A FEW THINGS THAT THE DOCTORS SAID IT COULD HAVE BEEN. FOR JUST UNDER TWO YEARS WE TRIED TO HANDLE A CHILD WHO PROJECTILE VOMITTED AFTER EVERY BOTTLE AND SHE REFUSED TO EAT, SHE ALSO CRIED ALL DAY, THANK GOODNESS SHE SLEPT ALL NIGHT FOR THE SAKE OF MY SANITY. I BECAME VERY SKILLED AT GETTING FOOD ON THE END OF HER DUMMY AND SHE WOULD SUCK IT DOWN. THE ONLY FOOD SHE WOULD EAT WAS EGG CUSTARD, SO FOR ONE AND A HALF YEARS SHE DRANK HER FORMULA AND ATE EGG CUSTARD. THERE WERE A FEW TRIPS TO THE HOSPITAL WITH A VERY LETHARGIC LITTLE GIRL. FINALLY ONE MONTH BEFORE HER 2ND BIRTHDAY (2 DAYS BEFORE CHRISTMAS 1996) WE TRAVELLED TO BRISBANE TO BE TOLD THAT THEY HAD FINALLY FOUND OUT WHAT WAS WRONG WITH MADISON. MADISON'S PAEDIATRICIAN, DR. TIERNAN, HAD BEEN DOING BLOOD TESTS ON MADISON EVERY 3 MONTHS AND HAD FINALLY FOUND THE PROBLEM. HE HAD ONCE DIAGNOSED A PATIENT WITH ARGININOSUCCINIC ACIDURIA YEARS AGO. IF HE DIDN'T HAVE THE KNOWLEDGE OF THE DISORDER FROM THE OTHER PATIENT, HE MIGHT NOT HAVE DIAGNOSED THE DISORDER IN MADISON. FINALLY AFTER PUTTING MADISON ON ARGININE SHE WAS A DIFFERENT CHILD. SHE ACTUALLY DRANK AND DIDN'T VOMIT AND STARTED TO EAT A LOW PROTEIN DIET, AND THE CRYING STOPPED AND SHE STARTED TO SMILE ALL THE TIME. MADISON WAS 5 YEARS OLD WHEN SHE HAD HER FIRST SEIZURE, WE WERE ALWAYS AWARE, SINCE SHE WAS A BABY THAT SHE MAY HAVE SEIZURES. WE WERE IN BRISBANE STAYING WITH MY COUSIN ( WHO IS A NURSE THANK GOODNESS) WHEN MADISON HAD HER FIRST FIT. WE WERE IN BRISBANE AS THE NEXT DAY WE WERE DUE TO SEE MADISONS METABOLIC DOCTOR (DR JIM MCGILL). DR MCGILL HAS BEEN MADISONS DOCTOR SINCE THE DIAGNOSIS IN 1996. MADISONS MEDICATION CONSISTS OF 12MLS OF TEGRETOL 3 TIMES A DAY AND 3 MLS OF ARGININE TWICE A DAY, BUT WILL SLOWLY GO UP AS SHE GROWS, SHE ALSO DRINKS 300MLS OF PRODUCT 80056 EACH DAY. SHE IS NOW DOING PRESCHOOL FOR THE SECOND YEAR AND WILL DO HER SCHOOLING IN THE SPECIAL EDUCATION UNIT AT WARWICK EAST STATE SCHOOL. WE ALSO GO TO HYDROTHERAPY ONCE A WEEK AND SHE HAS ATTENDED THE EARLY INTERVENTION CENTRE SINCE SHE WAS 9 MONTHS OLD. MADISON IS PYSICALLY AND MENTALLY DISABLED BUT IS THE ABSOLUTE APPLE OF HER MUM, DAD AND GRANDPARENTS EYE. AS EVERYBODY MISSED MADISONS BAPTISM, SHE WAS BLESSED ON THE 5 NOVEMBER 1995 IN THE ANGLICAN CHURCH AND HER LITTLE COUSIN WAS BAPTISED. I MADE SURE THIS TIME THAT NOBODY MISSED IT. MANDY, JOHN AND MADISON CREED can be contacted by clicking the link. |