MY NAME IS MARIYAH I WAS BORN ON FEB 7TH 2013 WITH HYPOPLASTIC LEFT VENTRICLE, HETEROTAXIA SYNDROME, ASPLENIA, & MORE....
SO HERES MY STORY.... MY MOMMY FOUND OUT IN UTERO THAT SOMETHING WAS WRONG WITH ME AROUND 12WEEKS GESTATION NOT KNOWING EXACTLY WHAT WAS WRONG DOCTORS TRIED TALKING MY MOMMY & DADDY INTO ABORTING ME ALL THE WAY UP UNTIL I WAS 26 WEEK GESTATION... MY MOMMY & DADDY WASNT HAVING IT THEY DIDNT CARE WHAT WAS WRONG WITH ME THEY WANTED TO GIVE ME A CHANCE AT LIFE... AROUND 18-20 WEEK GESTATION MY MOMMY GOT TO FIND OUT I WAS A GIRL BEST NEWS OF MY PREGNANCY.... THEN THE ULTRASOUND TECH LEFT THE ROOM AND HAD A HIGH RISK DOC COME IN TO TALK TO MY MOMMY AND DADDY THAT IS WHEN THEY SAW I HAD HETEROTAXIA SYNDROME, AND SOME SORT OF HEART DEFECT THEY WASNT SURE EXACTLY WHAT WAS WRONG WITH MY HEART THAT WAS THE WORSE NEWS MY MOMMY AND DADDY HAD GOTTEN.... ON FEB 6TH MY MOMMY WENT INTO LABOR WITH ME HOURS LATER SHE HAD ME ON FEB 7TH 2013 AT 7:05A.M. I WEIGHED 7LBS 5OZ EVEN THOUGH I WAS ALMOST A MONTH EARLY I WAS AT A VERY GOOD WEIGHT RIGHT AFTER I WAS BORN THE DOCTORS WHEELED ME AWAY FROM MY MOMMY AND DADDY AND TOOK ME TO THE NICU AND INCUBATED ME AND WAITED FOR AN ABULANCE TO TRANSPORT ME BEFORE I GOT TRANSPORTED THEY BROUGHT MY MOMMY AND DADDY DOWN TO SEE ME AND GIVE ME LOVINS AND I WAS TRANSPORTED DADDY CAME DOWN WITH ME WHILE MOMMY STAYED AT THE HOSPITAL... WHEN I GOT TO CHILDRENS HOSPITAL OF PGH THEY GOT ME ALL PREPPED UP FOR A HEART CATH AND THAT IS WHEN THEY FOUND OUT I WAS 10X WORSE THEN WHAT THEY THOUGHT I WAS DIAGNOSED WITH HYPOPLASTIC LEFT VENTRICLE, HETEROTAXIA SYNDROME, ASPLENIA, DEXTRACARDIA, SMALL STOMACH, AND MANY MORE... I NEEDED EMERGENCY SURGERY. MY DADDY CALLED MOMMY AND TOLD HER SHE PANIKKED AND SIGNED HERSELF OUT OF THE HOSPITAL AND CAME DOWN WITH ME DOCTORS TOLD MY MOMMY AND DADDY I ONLY HAD 35% CHANCE OF MAKING IT WITH OR WITH OUT SURGERY... THEY WHEELED ME BACK INTO THE OPERATING ROOM HOURS PASSED AND THEY WAS DONE I WAS FIGHTING FOR MY LIFE I CAME OUT WITH NO ECHMO MACHINE JUST INCUBATED I WAS FIGHTING ON MY OWN... ON FEB 8TH 2013 THE NURSE I HAD GAVE ME THE WRONG MEDS AND I WENT INTO CARDIAC ARREST ALL THESE BELLS WENT OFF AND ALL THESE DOCS CAME RUNNING TO MY SIDE THEY DID CPR ON ME AND GAVE ME ONE ROUND OF ARREST MEDS NOTHING WAS WORKING THE DOC TOLD THE NURSE TO GO GET THE SHOCK MACHINE AND ECHMO BUT BY THE TIME THEY GOT BACK I BROUGHT MYSELF BACK MY MOMMY AND DADDY WERE SO HAPPY I PULLED THROUGH...TO GET TO THE END OF MY STORY THERE ARE 3 PARTS TO MY SURGERY I HAD ONE ON FEB 7TH AND THE 2ND HAPPENED ON JUNE 25TH 2013 CALLED THE BILATTERAL GLENN... I CAME OUT OF THAT LIKE A CHAMP CAME HOME AT ONLY 7 DAYS RECOVERY... A MONTH LATER I WENT TO A GI DOCTOR AND HAD A BARRIUM STUDY DONE THEY FOUND OUT I HAD A SLIDING HIATAL HERNIA AND MY INTESTINE WERE MAL-ROTATED YET AGAIN ONLY OPTION IS SURGERY A FEW WEEKS LATER I WENT FOR THAT SURGERY WHILE DOING THAT SURGERY THEY DID A NISSAN ON ME AND REMOVED MY APENDIX AND PLACED A MIC-KEY BUTTON IT TOOK ME LONGER TO RECOVER FROM THAT SURGERY THAN IT DID MY 2ND OPEN HEART SURGERY.......AS OF NOW I AM HOME AND DOING GREAT... WILL ADD MORE AROUND MY 3RD SURGERY... THANKS FOR FOLLOWING AND PRAYING FOR ME!!!!! **UPDATE** WE ALSO FOUND OUT MARIYAH HAS A VERY RARE LUNG DISEASE ITS A TYPE OF CILILARY DYSKINESIA BUT NOT PCD WE WILL FIND OUT MORE AFTER HER FIRST BIRTHDAY
SO HERES MY STORY.... MY MOMMY FOUND OUT IN UTERO THAT SOMETHING WAS WRONG WITH ME AROUND 12WEEKS GESTATION NOT KNOWING EXACTLY WHAT WAS WRONG DOCTORS TRIED TALKING MY MOMMY & DADDY INTO ABORTING ME ALL THE WAY UP UNTIL I WAS 26 WEEK GESTATION... MY MOMMY & DADDY WASNT HAVING IT THEY DIDNT CARE WHAT WAS WRONG WITH ME THEY WANTED TO GIVE ME A CHANCE AT LIFE... AROUND 18-20 WEEK GESTATION MY MOMMY GOT TO FIND OUT I WAS A GIRL BEST NEWS OF MY PREGNANCY.... THEN THE ULTRASOUND TECH LEFT THE ROOM AND HAD A HIGH RISK DOC COME IN TO TALK TO MY MOMMY AND DADDY THAT IS WHEN THEY SAW I HAD HETEROTAXIA SYNDROME, AND SOME SORT OF HEART DEFECT THEY WASNT SURE EXACTLY WHAT WAS WRONG WITH MY HEART THAT WAS THE WORSE NEWS MY MOMMY AND DADDY HAD GOTTEN.... ON FEB 6TH MY MOMMY WENT INTO LABOR WITH ME HOURS LATER SHE HAD ME ON FEB 7TH 2013 AT 7:05A.M. I WEIGHED 7LBS 5OZ EVEN THOUGH I WAS ALMOST A MONTH EARLY I WAS AT A VERY GOOD WEIGHT RIGHT AFTER I WAS BORN THE DOCTORS WHEELED ME AWAY FROM MY MOMMY AND DADDY AND TOOK ME TO THE NICU AND INCUBATED ME AND WAITED FOR AN ABULANCE TO TRANSPORT ME BEFORE I GOT TRANSPORTED THEY BROUGHT MY MOMMY AND DADDY DOWN TO SEE ME AND GIVE ME LOVINS AND I WAS TRANSPORTED DADDY CAME DOWN WITH ME WHILE MOMMY STAYED AT THE HOSPITAL... WHEN I GOT TO CHILDRENS HOSPITAL OF PGH THEY GOT ME ALL PREPPED UP FOR A HEART CATH AND THAT IS WHEN THEY FOUND OUT I WAS 10X WORSE THEN WHAT THEY THOUGHT I WAS DIAGNOSED WITH HYPOPLASTIC LEFT VENTRICLE, HETEROTAXIA SYNDROME, ASPLENIA, DEXTRACARDIA, SMALL STOMACH, AND MANY MORE... I NEEDED EMERGENCY SURGERY. MY DADDY CALLED MOMMY AND TOLD HER SHE PANIKKED AND SIGNED HERSELF OUT OF THE HOSPITAL AND CAME DOWN WITH ME DOCTORS TOLD MY MOMMY AND DADDY I ONLY HAD 35% CHANCE OF MAKING IT WITH OR WITH OUT SURGERY... THEY WHEELED ME BACK INTO THE OPERATING ROOM HOURS PASSED AND THEY WAS DONE I WAS FIGHTING FOR MY LIFE I CAME OUT WITH NO ECHMO MACHINE JUST INCUBATED I WAS FIGHTING ON MY OWN... ON FEB 8TH 2013 THE NURSE I HAD GAVE ME THE WRONG MEDS AND I WENT INTO CARDIAC ARREST ALL THESE BELLS WENT OFF AND ALL THESE DOCS CAME RUNNING TO MY SIDE THEY DID CPR ON ME AND GAVE ME ONE ROUND OF ARREST MEDS NOTHING WAS WORKING THE DOC TOLD THE NURSE TO GO GET THE SHOCK MACHINE AND ECHMO BUT BY THE TIME THEY GOT BACK I BROUGHT MYSELF BACK MY MOMMY AND DADDY WERE SO HAPPY I PULLED THROUGH...TO GET TO THE END OF MY STORY THERE ARE 3 PARTS TO MY SURGERY I HAD ONE ON FEB 7TH AND THE 2ND HAPPENED ON JUNE 25TH 2013 CALLED THE BILATTERAL GLENN... I CAME OUT OF THAT LIKE A CHAMP CAME HOME AT ONLY 7 DAYS RECOVERY... A MONTH LATER I WENT TO A GI DOCTOR AND HAD A BARRIUM STUDY DONE THEY FOUND OUT I HAD A SLIDING HIATAL HERNIA AND MY INTESTINE WERE MAL-ROTATED YET AGAIN ONLY OPTION IS SURGERY A FEW WEEKS LATER I WENT FOR THAT SURGERY WHILE DOING THAT SURGERY THEY DID A NISSAN ON ME AND REMOVED MY APENDIX AND PLACED A MIC-KEY BUTTON IT TOOK ME LONGER TO RECOVER FROM THAT SURGERY THAN IT DID MY 2ND OPEN HEART SURGERY.......AS OF NOW I AM HOME AND DOING GREAT... WILL ADD MORE AROUND MY 3RD SURGERY... THANKS FOR FOLLOWING AND PRAYING FOR ME!!!!! **UPDATE** WE ALSO FOUND OUT MARIYAH HAS A VERY RARE LUNG DISEASE ITS A TYPE OF CILILARY DYSKINESIA BUT NOT PCD WE WILL FIND OUT MORE AFTER HER FIRST BIRTHDAY