Ashley's Story.

This is a picture of Ashley Rain Deloach. Ashley was my firstborn child. She was a beautiful baby girl born on Nov 18, 1998. I was a young and naive first time mother with out a clue of the real world. I had had a pretty uneventful pregnancy other than it being a "crises" pregnancy (meaning I was unmarried and it was unplanned and I lived in a bad situation). I was barely 20 years old when she was born. I went to the hospital in the city where I lived on Nov 18th, 1998 at around 8 am with the beginning of labor. In reality, I probably wasn't even in true labor but I was 38 weeks pregnant so the doctor decided to give me some pitocin to start the labor. I received an epidural so I felt absolutely no pain at all with the labor. At around 8:00 that night, my world was turned upside down. Ashley was born but was not crying, was not breathing. She was immediately whisked out of the delivery room and I was left not knowing what was going on. A couple of times, family members would come in and tell me "she's just having a little trouble breathing..." Finally, after what seemed an eternity, the ancient pediatrician came in. I am so thankful to God that he was there that day. He had the experience and wisdom to know immediately that all was not well and the wisdom of how to relay that message to me. He told me about her choanal atresia which basically meant she couldn't breathe out of her nose. The pediatrician than informed me that this usually a sign of more defects. He told me that because our hospital was a small hospital, they were not equipped to care for her to the level of care she would require and would need to be transferred to a larger city hospital. I was able to see her for just a second before she was transferred to St. Vincent's hospital. I received a call from the neonatologist in what seemed like the middle of the night. He informed me that upon physical examination, they had discovered many more abnormalities. To look at this baby girl, you would never suspect she had anything wrong with her. But upon closer observation, her ears were slightly deformed, her neck was shorter than normal, her hands were shaped abnormally (though they looked normal to me...) as well as other issues. When she was around a day or so of age, a surgeon went in to attempt to repair her choanal atresia. He warned us that the surgery may very well have to be repeated, as the bone could grow back up closed. We were still waiting to hear if she had any heart defects at this time. I went to a hotel that night and remember getting the call from I assume a cardiologist though it may have been the neonatologist again. I was informed that she not only had a heart defect, but that she had two major heart defects, Tetralogy of Fallot and Pulmonary Atresia. I cried so much that night that when I woke up my eyes were swollen shut. I was devastated. The next few months, my life became the NICU. She was transferred to another hospital that I will not name for their own protection. She was transferred there because her heart defects became more and more serious. She did not receive as high quality of care there that she has received at the previous hospital. As a result of their negligence, she ended up getting a staff infection that turned her overall health condition into life threatening. She did have a heart cath while at that hospital to determine treatment possibilities for her heart conditions. We were told if her heart arteries grew, we would be able to repair the pulmonary atresia which was the most life threatening of the two conditions.When the staff infection became severe, she was transferred to our favorite of the three hospitals, Children's Hospital in Birmingham, Alabama. She not only received quality care, but the staff consistently went above and beyond the call of duty. She had to have a spinal tap her first day there to see if the infection had spread to her spinal fluid. Thankfully, it had not. She was placed in an isolation room but the nurses always made sure she was clean, dressed and had colorful things to look at. It was there we discovered she had Coloboma. All the different defects together created a syndrome known as CHARGE syndrome or association. The link to their official website is here. Her coloboma was not a severe case though it didn't affect her eyesight a little bit. Her hearing was a whole other matter. I always suspected she was profoundly deaf. She wouldn't respond to my voice or to loud noises like babies usually do and most children who are diagnosed with CHARGE, do have hearing loss. The NICU nurses at Children's placed a tv beside Ashley's bed so that she could watch cartoons (which she LOVED). If the cartoons were on, she pretty much ignored all visitors. One day I decided to try an experiment to see if she could hear. I turned the volume wayyyyy up on the tv (and got in trouble for doing so... lol) and she broke out into a huge grin. That when I knew, she could hear but not very well. Those were her best days. She was on oxygen pretty much her whole life but at this time it was just a mask. She had other defects diagnosed such as reflux between her bladder and kidneys, as well as an esophogeal defect that caused her to aspirate when she took a bottle. She ended up having a g-tube placed for her feeding which resulted in somehow throwing her sugar out of whack. The only solution for controlling her sugar was to place her on a feeding pump to feed her continuously. She had a biopsy done of her liver (though I can't remember why at this time) but it came back normal. Her heart became more and more strained over time trying to pump oxygenated blood through her system and the neonatologist at Children's decided it was time to transfer her back to the "other" hospital for her heart surgery.  We were very unhappy but as this hospital was supposed to be one of the best in the country for heart issues, we agreed. She was back on the ventilator by the time she was transferred - little did we know, this time for good. They did a cath and reported to me that her arteries had indeed grown slightly. I was told that she would be transferred to a hospital in San Francisco for her surgery. At this point, I was being given conflicting stories from the nursing staff. Some of the nurses said she had an infection that had to be treated before we could set up transfer. Other nurses said she didn't have an infection and that we were just waiting for the other hospital to set up the transfer. To this day, I don't know who was telling me the truth or if either one was the truth. On June 12th at around 1:00 am, I received a phone call. I knew immediately it was about Ashley. At this point in time she had swelled up as a result of congestive heart surgery and was nearly unrecognizable as a baby much less as my beautiful little girl. She was miserable. She was in pain. I was in denial. I actually prayed to God about a day or so before that He either heal her or take her because I couldn't stand to see her hurting so badly. That phone call was my answer. I was told that she had some bleeding coming from her mouth and they thought her intubation tube may have nicked her throat. I was told that they were attempting to intubate her again but that it was serious enough that I needed to have someone drive me up there. I can still remember every moment of the next couple of hours. I got to the hospital and the doors were locked. I called the NICU and they sent a nurse down to open the doors. I remember the nurse running back to the NICU and I realized this was serious. I remember walking into the NICU and seeing a nurse on top of Ashley's bed performing CPR. I remember thinking oh. my. God. I remember someone bringing me a chair and telling me to sit down. I remember the doctor shaking his head and trying to quietly "call" the code. I remember being in disbelief, being numb thinking it wasn't true, it couldn't be. I remember them taking me to a room and then bringing her body to me finally free of all the wires and tubes that had held her prisoner for so long. I remember looking at this shell thinking, this is not my little girl...  And that is all I remember for the next month. I still have issues with her death. I still have flash backs to that night. And I still miss her so terribly much. But I am so thankful God finally took her home. She would be 11 1/2 years old today. I miss her.