Sunrise Children NICU 5/14/08 to 8/2/08
MayRose was born three months premature at Sunrise Children's Hospital. She remained in the NICU for three months during which time she had several surgeries including an Ileostomy when she was two days old during which they had to remove a small portion of her lower intestine which was perforated. She wore a colostomy bag until shortly prior to her discharge. The NICU doctors suspect that the perforation was caused by the indocin which was administered within the days prior to her birth. Indocin has been known to cause spontaneous perforations in the lower intestines of premature infants.
During her stay at Sunrise Children NICU, MayRose had 13 blood transfusions: two on May 14, two on May 15, and one on May 16, May 17, June 7, June 15, June 23, June 25, July 3, July 24 and July 26. Despite the physicians' knowledge that MayRose had a thick nuchal fold during gestation, which indicates a geneological defect in 70-80% of children, the doctors did not perform any testing or consult with any geneologists to determine whether any of her NICU difficulties might be associated with a geneological defect. Had they performed a series of simple Complete Blood Tests (CBCs) and Reticulyte (Retic) tests, they would have learned that the reason that she needed so many blood transfusions was because she was not producing any red blood cells.
During MayRose's hospital stay, she had the following surgeries/procedures: Intravenous fluids, Parenteral nutrician, Umbilical artery line, Umbilical venous line, Central venous line, PICC line, Continuous drip feeds, Gavage feeding, Gastric suction tube, Abdominal radiograph, Lieostomy, Exploratory laparotomy, Broviac placement, Osteomy takedown, Motility agent (Erythromycin), Ranitidine, Ventilation, Oxygen, Continuous positive airway pressure, High Flow nasal cannual oxygen, Chest X-ray, Intubation, Surfactant, Caffeine, Head ultrasound, ROP screen immature, Red blood cell transfusions, Phototherapy, Platelet transfusion, Transfusion of coagulation factors, Lumbar puncture, Ampicillin and Gentamicin (#1), Antibiotics (1st Course), Antibiotics (2nd Course), Cefotaxime and Vancomycin (#3), Ampicillin and Cefotaxime (#4), Antibiotics (1st Course), Antibiotics (2nd Course), Cefotaxime and Vancomycin (#3), Ampicillin and Cefotaxime (#4), Antibiotics (4th course), Vancomycin and Cefotaxime, Cefotaxime and Vancomycin (#6), Hib Vaccine, Pediatrix (DaPT/Hep B/inactive polio), Pneumoccoccal vaccine, Antifungal therapy, Analgesia / Sedation, Fentanyl drip, Morphine sulfate.
After surviving all of the surgeries and procedures listed above, she was discharged, and two subsequent CT Scans of her brain demonstrated that she was discharged with a normal brain and she would track her caregiver's movements throughout the house, clearly on course towards normal infant development. Other than instructions to try to keep MayRose "germ free" during her first three months, when they discharged MayRose, the doctors stated that they were sending home a "healthy baby" who had the common condition of Anemia of Prematurity, which often resolves itself with the use of daily vitamens with iron. Although they instructed her pediatricion to follow up with a CBC and a Retic test within one month of discharge, this was not done. Unfortunately, the Anemia of Preturity diagnoses proved to inaccurate. In fact, she actually suffers from Diamond Blackfan Anemia, and had never produced red blood cells. After MayRose was home for three months, she went into anemic shock and suffered diffuse brain damage that caused cerebral palsy, cortical visual impairment (she has been diagnosed as being legally blind), developmental delays and silent seizures. She also is now also at risk for osteopedia (weak bones).
During her stay at Sunrise Children NICU, MayRose had 13 blood transfusions: two on May 14, two on May 15, and one on May 16, May 17, June 7, June 15, June 23, June 25, July 3, July 24 and July 26. Despite the physicians' knowledge that MayRose had a thick nuchal fold during gestation, which indicates a geneological defect in 70-80% of children, the doctors did not perform any testing or consult with any geneologists to determine whether any of her NICU difficulties might be associated with a geneological defect. Had they performed a series of simple Complete Blood Tests (CBCs) and Reticulyte (Retic) tests, they would have learned that the reason that she needed so many blood transfusions was because she was not producing any red blood cells.
During MayRose's hospital stay, she had the following surgeries/procedures: Intravenous fluids, Parenteral nutrician, Umbilical artery line, Umbilical venous line, Central venous line, PICC line, Continuous drip feeds, Gavage feeding, Gastric suction tube, Abdominal radiograph, Lieostomy, Exploratory laparotomy, Broviac placement, Osteomy takedown, Motility agent (Erythromycin), Ranitidine, Ventilation, Oxygen, Continuous positive airway pressure, High Flow nasal cannual oxygen, Chest X-ray, Intubation, Surfactant, Caffeine, Head ultrasound, ROP screen immature, Red blood cell transfusions, Phototherapy, Platelet transfusion, Transfusion of coagulation factors, Lumbar puncture, Ampicillin and Gentamicin (#1), Antibiotics (1st Course), Antibiotics (2nd Course), Cefotaxime and Vancomycin (#3), Ampicillin and Cefotaxime (#4), Antibiotics (1st Course), Antibiotics (2nd Course), Cefotaxime and Vancomycin (#3), Ampicillin and Cefotaxime (#4), Antibiotics (4th course), Vancomycin and Cefotaxime, Cefotaxime and Vancomycin (#6), Hib Vaccine, Pediatrix (DaPT/Hep B/inactive polio), Pneumoccoccal vaccine, Antifungal therapy, Analgesia / Sedation, Fentanyl drip, Morphine sulfate.
After surviving all of the surgeries and procedures listed above, she was discharged, and two subsequent CT Scans of her brain demonstrated that she was discharged with a normal brain and she would track her caregiver's movements throughout the house, clearly on course towards normal infant development. Other than instructions to try to keep MayRose "germ free" during her first three months, when they discharged MayRose, the doctors stated that they were sending home a "healthy baby" who had the common condition of Anemia of Prematurity, which often resolves itself with the use of daily vitamens with iron. Although they instructed her pediatricion to follow up with a CBC and a Retic test within one month of discharge, this was not done. Unfortunately, the Anemia of Preturity diagnoses proved to inaccurate. In fact, she actually suffers from Diamond Blackfan Anemia, and had never produced red blood cells. After MayRose was home for three months, she went into anemic shock and suffered diffuse brain damage that caused cerebral palsy, cortical visual impairment (she has been diagnosed as being legally blind), developmental delays and silent seizures. She also is now also at risk for osteopedia (weak bones).