Shirley's story

HI, MY NAME IS SHIRLEY AND I WOULD LIKE TO SHARE WITH YOU MY STORY OF THE DEVASTATING HELLP SYNDROME, THAT SO BADLY AFFECTED MY BODY WHEN I WAS PREGNANT.

MY DAUGHTER WAS BORN APRIL 15,1999, AT 31 WEEKS GESTATION. ALTHOUGH SHE WEIGHED IN AT 5 LBS. 10 OZS, SHE WAS FAR FROM A HEALTHY BABY.

WHEN I FOUND OUT I WAS PREGNANT, I GOT VERY EXCITED, THINKING OH I WILL COME HOME TWO DAYS AFTER SHE'S BORN AND TAKE HER TO SEE ALL OF MY FRIENDS, AND SHOW HER OFF!!

WELL GOD HAD DIFFERENT PLANS FOR MY MYSELF AND MY DAUGHTER. I N THE BEGINNING OF MY PREGNANCY, EVERYTHING WENT PERFECT, I DID NOT EVEN HAVE MORNING SICKNESS. BUT, AT ABOUT SIX MONTHS ALONG, I STARTED GETTING SICK. FIRST, I STARTED VOMITING AND I COULDN'T EVEN HOLD WATER DOWN, MUCH LESS FOOD. I STARTED HAVING PAINS IN MY ABDOMEN AND LOTS OF HEADACHES. MY BLOOD PRESSURE WAS RISING AT A VERY FAST RATE. MY OB/GYN HAD NO CLUE WHAT EXACTLY WAS WRONG WITH ME. HE TOLD ME I JUST HAD A TOUCH OF TOXEMIA, AND NEVER WENT ANY FURTHER TO RESEARCH MY CONDITION.

BETWEEN 20 WEEKS AND 31 WEEKS, I WENT INTO PRE-TERM LABOR FOUR TIMES. AND, A FEW TIMES THEY DID NOT THINK THEY WERE GOING TO BE ABLE TO STOP IT. I WAS GIVEN MAGNESIUM SULFATE (WHICH I HAD A HORRIBLE ALLERGIC REACTION TO) AND BREATHANE, AND NUMEROUS OTHER MEDICATIONS. WHILE IN AND OUT OF THE HOSPITAL IN MY HOME TOWN, THEY DID A 24-HOUR URINE STUDY, WHICH SHOWED THAT I HAD TONS OF PROTEIN IN MY URINE. THAT WAS ANOTHER SIGN OF MAJOR PROBLEMS THAT MY OB/GYN MISSED.

AFTER, MY DOCTOR DECIDED THERE WAS NOTHING ELSE HE COULD DO; HE TRANSPORTED ME TO ANOTHER HOSPITAL IN ANOTHER TOWN. I ARRIVED AT THAT HOSPITAL ON A TUESDAY, AND THEY BEGAN NUMEROUS TESTS AND ULTRASOUNDS. I HAD GROUP B STREP POSITIVE OF THE UTERUS, AND I WAS GIVEN MEDICATIONS FOR THAT. THEY THEN, DECIDED I HAD HELLP SYNDROME. BY THEN, IT WAS TO LATE. THEY WERE GOING TO PUT A FEEDING TUBE IN MY NECK, SO THE BABY WOULD GET SOME NUTRITION, BUT ON THE DAY THEY HAD DECIDED TO PUT THEY FEEDING TUBE IN, MY DAUGHTER AND I CRASHED. I WAS IN AND OUT OF CONSCIOUSNESS, AND MY DAUGHTERS HEART BEAT WENT FROM 167 TO 49.

THEY WARNED MY FAMILY THAT I HAD A FIFTY-FIFTY CHANCE OF MAKING IT, AND THE BABY HAD EVEN LESS OF A CHANCE. THEY ALSO WARNED MY FAMILY, THAT BECAUSE MY BLOOD PLATELETS WERE SO MESSED UP THAT I COULD BLEED TO DEATH OR HAVE TO HAVE A COMPLETE HYSTERECTOMY. BEFORE TAKEN TO THE OPERATING ROOM, THEY HAD TO HAVE BLOOD READY TO GIVE ME A TRANSFUSION DURING SURGERY, SO I WOULDN'T BLEED TO DEATH.

I HAD FIVE IV'S IN MY ARMS ADMINISTERING MEDICATION. IT TOOK THEM EXACTLY ONE HOUR BEFORE THEY WERE READY TO DELIVER ME, AND THAT WHOLE TIME THE BABY WAS LIFELESS. THEY PUT ME COMPLETELY TO SLEEP, AND DELIVERED MY ANGEL AT 11:06 P.M. WHEN I AWAKENED IN THE DELIVERY ROOM I FOUND OUT THAT SHE WAS BORN WITH A VERY SLOW HEART BEAT, AND THAT SHE WAS NOT BREATHING. THEY VENTED HER, AND TOOK MY FAMILY UP TO SEE HER, BECAUSE THEY DID NOT FEEL THAT
SHE WOULD MAKE IT THROUGH THE NIGHT.

THE DOCTORS COULD NOT BELIEVE IT, BUT ALL OF MY PRESSURES AND BLOOD LEVELS HAD AUTOMATICALLY GONE BACK TO NORMAL, AFTER SHE WAS DELIVERED. THE NEXT MORNING I WAS OUT OF BED, AND BACK TO EATING, EVEN THOUGH I WEIGHED 42 POUNDS LIGHTER THE DAY SHE WAS BORN.

MY DAUGHTERS NAME IS DESTINY HOPE, AND THAT NAME WAS PICKED OUT BEFORE I KNEW THAT IF FIT SO WELL. MY DAUGHTER SCORED A 2 ON HER APGAR SCORE, WHICH WAS NOT VERY GOOD. THE FIRST TIME I SAW HER SHE WAS SO TINY, BUT SHE WAS DETERMINED TO FIGHT FOR HER LIFE. SHE WAS GOING TO WIN THE BATTLE THAT HAD STRUCK HER LITTLE TINY BODY.

WE WERE TOLD THAT SHE HAD A BLEED ON THE BRAIN, WHICH WOULD RESULT IN FLUID ON THE BRAIN. THEY WARNED US THAT A SHUNT (A TUBE THAT DRAINS FLUID OFF OF THE BRAIN) MAY HAVE TO BE PLACED BUT NOT AT THE CERTAIN TIME. SHE HAD SEIZURES, AND A HOLE IN HER HEART. SHE HAD A HOLE IN HER BOWEL, WHICH SHE WAS TAKEN TO SURGERY FOR AND HAD A COLOSTOMY BAG FOR 3 WEEKS. A FEEDING TUBE WAS ALSO PLACED BECAUSE SHE HAD NOT LEARNED HOW TO SUCK IN THE WOMB BEFORE SHE WAS BORN. THE BOWEL WAS PUT BACK TOGETHER WHEN THEY PUT THE FEEDING TUBE IN, AND IT SEEMED TO WORK OKAY. SHE HAD A HEMORRHAGE ON HER LIVER.

PRAYER IS WHAT SAVED HER FROM HAVING TO HAVE A SURGERY ON THAT. SHE TOOK HER FIRST BREATH ON HER OWN WHEN SHE WAS SIX WEEKS OLD, AND THAT WAS THE FIRST TIME I GOT TO HOLD HER. IT FELT SO GOOD TO HEAR HER CRY, ALTHOUGH WE KNEW WE WERE IN FOR A LONG JOURNEY. MY MOTHER AND FATHER AND OTHER FAMILY STOOD BY MY SIDE THROUGH IT ALL. THE BIOLOGICAL FATHER WAS NOWHERE AROUND. BUT, WE MADE IT THROUGH.

MY DAUGHTER WAS BORN ON APRIL 15, 1999. HER ORIGINAL DUE DATE WAS JUNE 14, 1999, AND SHE CAME HOME FROM THE HOSPITAL ON JUNE 18,1999. WE BROUGHT HER HOME ON OXYGEN, AND AN APNEA MONITOR. WE HAD HER HOME FOR THREE WEEKS, WHEN HER HEAD BEGAN FILLING WITH LOTS OF FLUID. THE DOCTORS DECIDED THAT IT WAS TIME FOR A SHUNT TO BE PLACED. IT WAS PLACED AND SHE WAS IN THE HOSPITAL FOR TWO DAYS, AND WE BROUGHT HER BACK HOME. THE SHUNT WORKED MIRACLES. WE TUBE FED HER FOR A WHILE, BUT THEN SHE BEGAN TO SUCK, AND STARTED EATING FROM A BOTTLE.

IN SEPTEMBER AT AROUND FIVE MONTHS OLD, THE FEEDING TUBE WAS REMOVED. NOW MY DAUGHTER IS THREE YEARS OLD, AND TO LOOK AT HER YOU COULD NEVER TELL SHE HAS A PROBLEM. SHE HAS TWO SHUNTS NOW THAT DRAIN FLUID OFF OF HER BRAIN, BUT HER HAIR IS SO LONG YOU CANNOT EVEN SEE THEM. SHE IS MY MIRACLE CHILD, AND ALWAYS WILL BE. I DON'T KNOW WHAT LIFE WOULD BE LIKE WITHOUT HER. SHE HAS SPEECH AND PHYSICAL THERAPY THAT WORK WITH HER TWICE A WEEK, ALONG WITH ME AND HER STEPFATHER AND GRANDPARENTS.

SHE GOT A DADDY IN HER LIFE WHEN SHE WAS ONE YEARS OLD, AND HAS DEVELOPED A LOT SINCE HE HAS BEEN IN HER LIFE. IT HAS BEEN A VERY LONG HARD ROAD TO TRAVEL DOWN, BUT THE DOCTORS TOLD ME DESTINY WOULD NEVER EAT ON HER OWN, WALK, TALK, OR DO ANYTHING THAT A NORMAL CHILD DOES. AND DESTINY IS LIVING PROOF THAT SOME DOCTORS ARE WRONG. SHE EATS ON HER OWN, SHE WALKS AND RUNS, AND TALKS. SHE IS AS ACTIVE AS A NORMAL CHILD, AND NOTHING SLOWS HER DOWN.

ANYONE THAT HAS GONE THROUGH HELLP SYNDROME KNOWS WHAT A LONG HARD ROAD IT IS, BUT JUST HOLD ON AND IT WILL BE ALL WORTH WHILE IN THE END.

I WANT TO THANK MY MOTHER AND FATHER, AND MY HUSBAND FOR HELPING ME GET DESTINY TO WHERE SHE IS TODAY. WITHOUT THESE THREE PEOPLE I DON'T KNOW IF I COULD HAVE EVER DONE IT ON MY OWN. THANK YOU FOR LETTING ME SHARE MY STORY AND I HOPE THAT THIS BRINGS INSPIRATION TO OTHER MOTHERS WHO HAVE HELLP SYNDROME OR ARE RAISING SPECIAL NEEDS CHILDREN, AS A RESULT OF HELLP SYNDROME.

Shirley