Dear Mr. Sparks,
My name is Angie. I am the mother of two beautiful little girls. I gave birth to my second daughter, Ashley Kaitlyn Abel, on January 10, 2001, by repeat c-section at Central Carolina Hospital in Sanford, NC. We were the first case that morning. We knew we were having a little girl. We knew the day and time she was going to be born. What we didn't know was that our little girl would be born with a diaphragmatic hernia.
I had a very smooth pregnancy. I had an ultrasound in my first trimester to confirm the due date and then another one at 18 weeks. The hernia did not show up on the 18-week ultrasound. At that time, the abdominal organs were still in their correct anatomical position. Since I had a healthy baby the first time and was not considered high risk, a third ultrasound was not done.
My husband and I arrived at the hospital at 5:30 a.m. I was taken into the OR around 7:00 a.m. I was given a spinal block and had the final preparations for surgery. My husband was in the operating room with me. I had a rough delivery because my daughter was stuck. The doctor used the vacuum to free her, and for the second time in my life, I heard the most beautiful sound, the cries of my newborn baby girl. But those cries were followed by a deafening silence. At first I thought that the doctors were suctioning her nose and mouth. Still no sounds. I watched them take her to the corner of the room. When I asked what was wrong, I was told that she was just having a little trouble breathing on her own; some newborn babies do. My baby was brought over to me twice, only to be whisked away to the corner of the room each time. They took Ashley out of the OR, and my husband went with her. I didn't know what was going on, but I didn't want her to be alone.
After my incision was closed, I was taken downstairs to recovery by the anesthesiologist. He called the newborn nursery to find out what was going on and let me talk to my husband. I still was being told that she was just having a little trouble breathing. The anesthesiologist instructed the nurse to get me up to my room ASAP, and he went back to the nursery to check on her (I found this out later). I was taken up to my room, where my parents and my 19-month-old little girl were waiting. When I asked them what was going on, they really didn't know any more than I did. We called and asked my Aunt Susie to come to the hospital, and she was there within a few minutes. Shortly after that, my husband came in and was followed by the doctors. The pediatrician told us that Ashley had a diaphragmatic hernia and explained what it was. She wasn't sure if Ashley had a left lung; her heart was pushed over a little to one side; and she was not sure which abdominal organs were involved. They told me that the helicopter from UNC Hospitals at Chapel Hill, NC was on the way to transport her. I asked the doctor what Ashley's chances of recovery from this were, and she told me 50/50. My doctor had arranged for me to be transported by ambulance to UNC Hospital. My husband and family were going to follow in the car.
We waited for the paramedics to bring Ashley in. She had been intubated and placed in an isolete. They pushed her over to my bed and let me reach inside and touch her. I told her that I loved her and would see her soon. They left with her, and my husband and aunt followed. I waited for the ambulance crew to come get me. It was about a 45-minute ride to the hospital we were being transferred to. My parents and daughter left after I did. We were all reunited in the ER of UNC Hospital with the exception of my baby. She had been admitted to the Newborn Critical Care Unit and was being evaluated by the doctors and nurses. The NCCU doctor came to the ER to talk to us. She told us that they would have to wait for 3 days before they could do surgery on Ashley. She would have to be monitored and evaluated for that period of time and the survival rate was about 60%. I was then taken to my room on the same floor as the NCCU. The nurse brought in a wheelchair, and I went to see Ashley. I visited with her as much as I could over those three days. She was doing well. They kept cutting back on the ventilator. The surgeon came and talked to us when Ashley was one day old and told us that she was doing very well and that if she continued to make such progress that he would perform the surgical repair when she was 3 days old, which he did.
The day for surgery came. The nurse called my room around lunch and said it was time for Ashley to go. We went to the NCCU to see her, and they allowed us to go with her to the surgical area. My husband stayed across the hall in the waiting area, and I went back to my room where my daughter and parents were waiting. Halfway through the surgery, the anesthesiologist came out and said the repair was complete and Ashley was doing great. She was going to have to stay in surgery a little while longer so that a Broviac could be inserted into her thigh and a chest tube put in. My husband was allowed to walk along side as Ashley was brought back to the NCCU, but they asked us not to visit until they called us. They needed to get her hooked up to all of the monitors and assess her. About 30 minutes went by, and they called us to come see her. Ashley was doing just fine. The surgeon told us that her stomach, spleen and intestines had migrated through the hole in her diaphragm and compressed the left lung. The heart was not involved. She did have lung tissue on the left side and it would be fully developed by the time she was a year old.
I was discharged the day after her surgery. My husband and I visited Ashley every day until she was able to come home. I even spent the night with her in the family room once. It was hard to leave her, but we knew that our little girl had to be there.
Ashley came off of the ventilator 3 days after her surgery. She was extubated and given oxygen by nasal cannula for 4 days. Her chest and stomach tube came out when she was 8 days old. She was also taken off of the medications she had been given and moved from a warmer to a crib. They began feeding her breast milk through an NG tube. I finally got to hold Ashley and it was great. I didn't want to put her down. She continued to make great progress. She only had to learn to suck, swallow, breathe.
She was moved to the newborn intermediate care unit when she was 17 days old. She seemed to do better at breastfeeding rather than bottle. One of the nurses also tried finger feeds. My breast milk was supplemented with high calorie formula to help her gain weight. She was on Reglan and Zantac for reflux. She finally started to tolerate the bottle feeds well enough to come home. The NG tube and Broviac were removed and Ashley was discharged at 25 days old. Five days after she was released, we had to take her back to the ER at UNC. She had picked up a stomach bug and had become dehydrated from the vomiting. She drank several ounces of Pedialyte without vomiting, so they let her come back home. She has done well ever since.
Through trial and error, I discovered that she didn't really have reflux; she was lactose intolerant. I switched her formula about 3 weeks after she came home, and her meds were discontinued. She had episodes of rapid heart rate (SVT) and breathing (tachypnia) while she was in the NCCU. She also had a small PDA (opening between heart and lungs that usually closes after birth). She was put on digoxin, which stopped the SVT and tachypnia. The doctors continue to monitor the PDA. Half of the children with this condition require surgery to close the opening and in the half of the cases it closes on its own. The cardiologist has said that he will do surgery if it does not close by the time she is 3. She continues to gain weight and is not at all behind developmentally. Ashley is truly a miracle baby.
Sincerely,
Ashley's mom, Angela Abel (North Carolina)
My name is Angie. I am the mother of two beautiful little girls. I gave birth to my second daughter, Ashley Kaitlyn Abel, on January 10, 2001, by repeat c-section at Central Carolina Hospital in Sanford, NC. We were the first case that morning. We knew we were having a little girl. We knew the day and time she was going to be born. What we didn't know was that our little girl would be born with a diaphragmatic hernia.
I had a very smooth pregnancy. I had an ultrasound in my first trimester to confirm the due date and then another one at 18 weeks. The hernia did not show up on the 18-week ultrasound. At that time, the abdominal organs were still in their correct anatomical position. Since I had a healthy baby the first time and was not considered high risk, a third ultrasound was not done.
My husband and I arrived at the hospital at 5:30 a.m. I was taken into the OR around 7:00 a.m. I was given a spinal block and had the final preparations for surgery. My husband was in the operating room with me. I had a rough delivery because my daughter was stuck. The doctor used the vacuum to free her, and for the second time in my life, I heard the most beautiful sound, the cries of my newborn baby girl. But those cries were followed by a deafening silence. At first I thought that the doctors were suctioning her nose and mouth. Still no sounds. I watched them take her to the corner of the room. When I asked what was wrong, I was told that she was just having a little trouble breathing on her own; some newborn babies do. My baby was brought over to me twice, only to be whisked away to the corner of the room each time. They took Ashley out of the OR, and my husband went with her. I didn't know what was going on, but I didn't want her to be alone.
After my incision was closed, I was taken downstairs to recovery by the anesthesiologist. He called the newborn nursery to find out what was going on and let me talk to my husband. I still was being told that she was just having a little trouble breathing. The anesthesiologist instructed the nurse to get me up to my room ASAP, and he went back to the nursery to check on her (I found this out later). I was taken up to my room, where my parents and my 19-month-old little girl were waiting. When I asked them what was going on, they really didn't know any more than I did. We called and asked my Aunt Susie to come to the hospital, and she was there within a few minutes. Shortly after that, my husband came in and was followed by the doctors. The pediatrician told us that Ashley had a diaphragmatic hernia and explained what it was. She wasn't sure if Ashley had a left lung; her heart was pushed over a little to one side; and she was not sure which abdominal organs were involved. They told me that the helicopter from UNC Hospitals at Chapel Hill, NC was on the way to transport her. I asked the doctor what Ashley's chances of recovery from this were, and she told me 50/50. My doctor had arranged for me to be transported by ambulance to UNC Hospital. My husband and family were going to follow in the car.
We waited for the paramedics to bring Ashley in. She had been intubated and placed in an isolete. They pushed her over to my bed and let me reach inside and touch her. I told her that I loved her and would see her soon. They left with her, and my husband and aunt followed. I waited for the ambulance crew to come get me. It was about a 45-minute ride to the hospital we were being transferred to. My parents and daughter left after I did. We were all reunited in the ER of UNC Hospital with the exception of my baby. She had been admitted to the Newborn Critical Care Unit and was being evaluated by the doctors and nurses. The NCCU doctor came to the ER to talk to us. She told us that they would have to wait for 3 days before they could do surgery on Ashley. She would have to be monitored and evaluated for that period of time and the survival rate was about 60%. I was then taken to my room on the same floor as the NCCU. The nurse brought in a wheelchair, and I went to see Ashley. I visited with her as much as I could over those three days. She was doing well. They kept cutting back on the ventilator. The surgeon came and talked to us when Ashley was one day old and told us that she was doing very well and that if she continued to make such progress that he would perform the surgical repair when she was 3 days old, which he did.
The day for surgery came. The nurse called my room around lunch and said it was time for Ashley to go. We went to the NCCU to see her, and they allowed us to go with her to the surgical area. My husband stayed across the hall in the waiting area, and I went back to my room where my daughter and parents were waiting. Halfway through the surgery, the anesthesiologist came out and said the repair was complete and Ashley was doing great. She was going to have to stay in surgery a little while longer so that a Broviac could be inserted into her thigh and a chest tube put in. My husband was allowed to walk along side as Ashley was brought back to the NCCU, but they asked us not to visit until they called us. They needed to get her hooked up to all of the monitors and assess her. About 30 minutes went by, and they called us to come see her. Ashley was doing just fine. The surgeon told us that her stomach, spleen and intestines had migrated through the hole in her diaphragm and compressed the left lung. The heart was not involved. She did have lung tissue on the left side and it would be fully developed by the time she was a year old.
I was discharged the day after her surgery. My husband and I visited Ashley every day until she was able to come home. I even spent the night with her in the family room once. It was hard to leave her, but we knew that our little girl had to be there.
Ashley came off of the ventilator 3 days after her surgery. She was extubated and given oxygen by nasal cannula for 4 days. Her chest and stomach tube came out when she was 8 days old. She was also taken off of the medications she had been given and moved from a warmer to a crib. They began feeding her breast milk through an NG tube. I finally got to hold Ashley and it was great. I didn't want to put her down. She continued to make great progress. She only had to learn to suck, swallow, breathe.
She was moved to the newborn intermediate care unit when she was 17 days old. She seemed to do better at breastfeeding rather than bottle. One of the nurses also tried finger feeds. My breast milk was supplemented with high calorie formula to help her gain weight. She was on Reglan and Zantac for reflux. She finally started to tolerate the bottle feeds well enough to come home. The NG tube and Broviac were removed and Ashley was discharged at 25 days old. Five days after she was released, we had to take her back to the ER at UNC. She had picked up a stomach bug and had become dehydrated from the vomiting. She drank several ounces of Pedialyte without vomiting, so they let her come back home. She has done well ever since.
Through trial and error, I discovered that she didn't really have reflux; she was lactose intolerant. I switched her formula about 3 weeks after she came home, and her meds were discontinued. She had episodes of rapid heart rate (SVT) and breathing (tachypnia) while she was in the NCCU. She also had a small PDA (opening between heart and lungs that usually closes after birth). She was put on digoxin, which stopped the SVT and tachypnia. The doctors continue to monitor the PDA. Half of the children with this condition require surgery to close the opening and in the half of the cases it closes on its own. The cardiologist has said that he will do surgery if it does not close by the time she is 3. She continues to gain weight and is not at all behind developmentally. Ashley is truly a miracle baby.
Sincerely,
Ashley's mom, Angela Abel (North Carolina)
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