Information for parents, professionals and adults with ANSD



Elijah’s Story

 by Mary Shaddox

His Birth


My second son, Elijah, was born eight weeks early on April 29, 2000. My first son, Jacob was only 3 years 9 months old when his brother came early. Thankfully he was spending the night at my mom’s house when my husband rushed me to the hospital. We went to a small hospital near us, where we hoped labor could be stopped. Unfortunately, my water had broken and there was no time to transport me to a larger hospital in Dallas. Elijah was born at 8:38 A.M. after a four and a half hour labor. He had red hair just like Jacob. He weighed 4 lbs. 9 oz.

The nurses from Presbyterian Hospital in Dallas soon arrived to transport him to their Neonatal Intensive Care Unit (NICU). He would be transported by ambulance, since the weather was too bad for the helicopter. My husband followed him down. I only got to see him briefly while he was in the incubator. They had tried to intubate him because of his breathing but he fought them too hard.

I stayed behind at the hospital, and was discharged around 5:30 that afternoon. I went home and saw Jacob briefly, packed a bag, and then my mom drove me to the hospital. Elijah had a tube down his throat and all kinds of wires hooked up to him. The doctor’s biggest concern was for Elijah’s lungs. He was on a ventilator for 12 days. He did not respond to the medicine Surfactin, which was a steroid to help with lung development. It was very touch a go for a while. Thankfully, he pulled through, but after the tube was pulled he still needed oxygen to keep his oxygen levels up. He wore a cannula in his nostrils that was hooked up to the oxygen. I had experienced no high risk symptoms and had received no steroids to help his lung development. He was considered an “old fashioned” preemie.

I was finally able to hold him after 12 days. He was very tiny. He was fed by IV. I was able to change diapers and help the nurses. On May 14th, Mother’s Day, he was moved to the Special Care Nursery. The NICU was such a crowded place and was used for the sickest babies. They then could graduate to the Special Care Nursery, where they still got very close care but in a less hectic environment. There were about 12 babies in their at a time. We had our own little area and each nurse cared for three to four babies at a time. It was also a lot quieter.

We had to teach Elijah how to pace himself to drink from a bottle. We also worked on breast feeding. He learned quickly. He was still on oxygen, but they were trying to wean him off of it. The Neonatologist soon asked us if we were willing to go home with oxygen. We decided if that was the only thing keeping him in the hospital then we were willing to do it.

Now I am a school teacher. I missed the last four weeks of school then we headed into the summer. I at least didn’t have to worry about going back to work soon. I am a teacher of the deaf. Jacob had been going to his babysitters during the day while I was at the hospital and then I would pick him up in the afternoon. David, my husband, would usually go down to the hospital at night. It was a very hectic five weeks to say the least. Elijah with his nurse Gena on his discharge day

Elijah was scheduled to come home on June 1, 2000. He was due to have an ABR(auditory brainstem response) on that day. All premature babies have an ABR before going home. I was at home that morning waiting for the oxygen company to drop off all of the equipment and for the nurse to explain it all to David and me. We would have to take a tank with us to use to bring him home. I called down to the nursery to talk to the nurse and double check all of the things I needed to bring with me that afternoon. She asked if I had spoken to the audiologist. I said , “NO” and she asked me to hold on for a minute. It was a very long minute.

The audiologist came back and explained that Elijah had an abnormal ABR. I heard her, but didn’t really hear her. I asked her to explain everything again. Now, all of the nurses who had worked with Elijah knew I taught deaf children. I had become quite close to a few of the nurses and his nurse that day was one that had had Elijah several times. I don’t know if that is why the audiologist was so “cold” when she told me or if that is the way she usually was. She said she would leave information for me and that we would need to schedule another ABR within a month. I needed to talk to my insurance company to see who to go to for that. I now had the fun task of telling my husband and other family members.

I also called my supervisor, Becky. We had talked a great deal those five weeks. I told her about the ABR and asked her what she knew about them. She gave me the best advice that day. She told me to bring Elijah home and to just enjoy him and not to concentrate too much on the ABR for now. We had been through so much, we should just celebrate in his homecoming. I cried a bucket of tears that day. David had a job interview that he could not reschedule so my mom went with me to pick up Elijah. We had just purchased a new van, since we would need room for oxygen and a pulse oximeter, nevertheless two children. Elijah at 5 weeks

My mom and I went to the hospital. We said our good-byes to the nurses and staff. We got all of our home instructions. We would need to see a pulmonologist soon and go into see the pediatrician within a week. We packed him up and brought him home. We managed to get through the first night and slowly learn to be at home with our son. The hardest part was waking him up every 3 hours, even at night, to feed him. Since he was premature he didn’t wake up himself to eat. After his original due date passed, June 24th, he soon started to eat better. I also decided to stop breast feeding by the end of July. He still had difficulty with it and I would soon be returning to work.

ANSD Information is owned by the parent of a teenager with ANSD and  has no ties to any implant center, audiologist, hospital or clinic.