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Halle Revels was born July 31, 2000.
She received the Gift of Life April 17, 2001.
Halle Gracen Revels was born on July 31, 2000 at 6:30am. It had been a long, tough pregnancy, with 2 episodes of pre-term labor and strict bedrest for the last 3 months of her pregnancy.
Finally the wonderful day came and Halle Gracen was born after 8 hours of labor along with the assistance of suction and forceps that left facial bruising.
She didn't cry much after the delivery and the pediatrician said it wasn't unusual after the trauma of the delivery and being 5 weeks early at birth.
By the second day, Halle had minimal arousal episodes and poor feeding with frequent vomiting in the nursery. She also had trouble maintaining her body temperature. A neonatologist was consulted from the local University Children's Hospital, who came and ran a battery of additional tests along with a neurologist.
The neonatologist discussed the remote possibility Halle had a rare metabolic disease but that was all that was said at the time. Meanwhile, all of her tests came back negative for infection or injury/bleeding in the brain.
By the third day, Halle started having spells where she would stop breathing (apnea) and jerky movements were noted that were questionable for seizure activity. An EEG was checked and again was normal for age. Yet, as the day went on, Halle got worse and another Neonatologist was consulted and recommended Halle be put on a vent and transferred to the University Children's Hospital.
Later that night we were told of a extremely abnormal and elevated ammonia of 1840. We were told by the neonatologist, whom had discussed our case with a Metabolic specialist from John's Hopkins, that our daughter had a Urea Cycle defect with now a hyper-ammonemic crisis and coma!
They also reported that our daughter may die even with treatment or would be moderately to severely retarded. Dialysis treatment was discussed versus acute IV Arginine therapy and stated that there was no difference in outcome with dialysis or IV treatment in her eventual outcome.
We now know this is not true, but at the time all we wanted was for our beautiful daughter not to suffer. Therefore, we opted for IV Arginine, which was started and did decrease the ammonia within 24 hours to near normal values.
Halle was eventually weaned off the vent and extubated within 3 days. She exhibited minimal alertness or responsiveness. We were actually told that she might not live very long off of the vent, so we cherished every moment we had with our daughter.
By the miracle of God, Halle didn't pass away but actually maintained herself well off the vent. She was started on a severely restricted protein diet mainly through NG tube feedings due to her poor oral feeding (only taking 4-5cc). She was also kept on the Arginine & PhenylButyrate combination.
The 3 weeks in the NICU were the worst ever imaginable in terms of an hourly changing roller-coaster ride. But with time, Halle made slow progress and was able to be discharged home with a strict diet and meds.
We came home not knowing how long we would have our little angel in fear of another high ammonia episode.
Over the next 6 weeks, Halle slept most of the time. She slowly improved her oral intake to the point of removing the NG tube. But as everyone who has a loved one with this defect knows, as weight is gained the amount of the meds are increased. So the vicious feeding cycle began again.
Halle was behind two to three months with developmental milestones at 8 months of age. It was through these first 8 months that we went through multiple episodes of prayer and meditation for the right course of treatment for our daughter. Whether that would be a continued life-long restricted protein diet with the usual cocktail of meds or a liver transplant. Well, as any parent would do faced with that decision, we initially decided to stay with the diet/meds, but after getting other opinions from other metabolic doctors and tabulating all of the data received then we once again prayed, prayed and prayed!
Eventually, we decided that a liver transplant was the only way to preserve Halle's brain at its current state. With that decision, we went to the University of Alabama at Birmingham and met with the transplant surgeon/team and within 2 weeks they called back and put her on the transplant list in November at 5 months old.
Three months later, the day after Easter, we received, "The Call," stating that they had a 2 year-old liver for our daughter. The surgeon stated, "If you have been waiting for the perfect liver then this would be it!," We packed and made it to Birmingham in record timing to restart our daughter's life.
Halle received her transplant at UAB on 4-17-01 with the surgery lasting 4 hours without complications. She was kept sedated on the vent for 2 days. On the second day, Halle's sedation drip was removed and she was allowed to wake up. She came off the vent well but was slow to fully awaken for an additional 2-3 days.
Once she did arouse, it was found that she had caught a cold from the ICU. But by that time her liver numbers were normal and have remained as such ever since.
She made steady progress for 1-2 weeks after the transplant as well as getting a taste of NORMAL formula with all of the protein that she could eat. We were discharged to a local apartment at 16 days after the transplant.
Within 1-2 weeks after leaving the hospital, Halle was starting to sit up and crawl on her own.
Within 4-5 weeks of the transplant, Halle went on to crawling and rolling over. She also was more attentive and responsive to her surroundings.
We returned home as a family in May 2001. Halle has been improving in all areas of development ever since. She performs new activities every 1-2weeks.
She is now saying DaDa and MaMa. She also is standing and cruising, but not yet taking steps.
She just had her 1st Birthday about 1 month ago and what a blessing it was to celebrate her life with family and friends. And of course, let's not forget all the cake and ice cream she wanted!
Like all of our T.R.U.E kids she is a miracle child!!!!!!!!
-Brandy & Tim Revels