Virginia Daly
Born 07/29/1997
Written by Joyce Daly

Virginia fall 2006 School Picture, age 9, CDG type 1a

Virginia was frank breach (butt first) to 35 weeks gestation. She was manually rotated to the proper birthing position at the 35th week. On July 29, 1997, at 41 weeks, she was born after 7 hours of relatively easy labor. She was 8 lbs. 8 oz. and 20 1/2 inches long at birth. The cord was wrapped around her neck one time, and she passed a little thin meconium or green poop. She inhaled a little of the meconium, causing pneumonia that presented itself after she was about 5 hours old. She stayed an extra day in the hospital receiving IV antibiotics, gentamicin and ampicillin. She came home on the IV antibiotic ampicillin. She had Erb's palsy in her left shoulder making it painful for her to rest on her left side, especially while attempting to nurse her. She was a little jaundice but needed no treatment. I placed her in indirect sunlight as a precaution for the jaundice.

Virginia had a poor suck for nursing, and failed to gain weight. She didn't nurse well from bottles.

Virginia at 13 Months

At eight months, and after several blood tests indicating high liver enzymes, her father and I approved the insertion of a G-tube and a liver biopsy. The liver biopsy showed some fibrosis and cirrhosis, but was otherwise normal. The doctors at Shands Hospital at The University of Florida sent the specimen to Duke University for further analysis. Dr Chung at Duke University received the biopsy and directed the Shands Hospital team to look towards a glycogen storage problem.

At 11 months, on July 9, 1998, Virginia had gained enough weight to allow for a change in the G-tube size. A Surgi Tech button was removed and replaced with a Micro Tech button. On July 14, at 8:15p.m., there was blood in the milk that I allowed to flow into the 60cc syringe to decompress any gas in Virginia's tummy. At 10:15p.m., I notified Shands Hospital and our Pediatrician that we were on our way to the hospital. At 3:15p.m. the following afternoon, Virginia began the first of 3 back to back operations to save her life. The stomach arteries across from the G-tube were bleeding. By the time the third surgery was over, she had lost the equivalent of all her blood. She then required an extended hospital stay because she contracted Pseudomonas, Streptococcus, and Staphylococcus. In August 98 Virginia was given a blood test that was sent to Houston, Texas. In September we received the results. She had CDGS. We were not given a type.

After the abdominal bleed, she had an old fashioned latex G-tube.

Virginia Merry Christmas 2004

Presently she has a latex Foley catheter, because Mommy accidentally pulled the G-tube out. Vomiting and gas have been a problem that comes and goes. It seems to be worse in the evening. Propulsid was discontinued after July 15, 1998 due to a recent warning suggesting a link to possible heart problems. I give her Zantac and Simethicone for the gas and vomiting. She drinks Prosobee during the day and I run it through a feeding pump at night. We have tried Pediasure, Nutramigen and Pregestimil, but her tolerance to these is questionable. At 14 months, Virginia eats no solid foods and only weighs 14 lbs. 10 oz. We are not in the mannose trials.

Virginia can roll over and lift herself off the mattress with her arms. She holds her head up for short periods of time when she is being carried. She loves to hear her 4 year old sister and me sing. She likes to do Patty Cake and the Itsy Bitsy Spider and loves it when I dance with her. She likes to play with a little electronic board train with push button. She enjoys it when I read to her and her sister. She gets excited and squirms and kicks when her older sister is jumping around and giggling. She loves to laugh, but also seems to frighten easily.