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Sydney Elizabeth
Sydney's story begins on New Year's Day, 2005 when I found out I was pregnant with my 3 rd child. My pregnancy was pretty normal. All of my ultrasounds were fine and there was no cause for concern, so we thought. Sydney was born on August 24, 2005 at 10:18 AM via a scheduled C-Section at Henrico Doctor's Hospital in Richmond, VA. She weighed in at 6 lbs, 6 ozs and was 19 inches long. Her APGAR scores were 9 and 9. Everything looked good. The pediatrician, Dr. Andrako, came in and checked her out and heard a murmur that was "slightly louder than what we like to hear" and called in Dr. Thomas Albrecht, MD, a pediatric cardiologist. Sydney was taken up to the nursery and was checked by the nurses, given a bath, and put under the warmer until Dr. Albrecht could get to the hospital.
At 4:30 pm that afternoon, Dr. Albrecht came into my room with a nurse. I was there by myself taking a nap and waiting for my newest little girl to be able to come to my room and get to hold her. I'll never forget what he said. "Your daughter has a problem with one of the valves in her heart and I have called a transport team from UVA Medical Center to come and pick her up and transport her there. She will have surgery tomorrow morning." Sydney has Aortic Stenosis (AS). Dr. Albrecht advised me that her Aortic Valve was a bi-cuspid, instead of a tri-cuspid, valve and was barely functioning and letting very little blood out of the valve to the Aorta. The procedure that she would undergo was called a balloon valvuloplasty, which is a procedure in which a narrowed heart valve is stretched open using a procedure that does not require open heart surgery. After he went over everything, he sent the nurse to bring Sydney to my room so I could say my "hello's and goodbye's". My mom walked in at the end of the conversation with Dr. Albrecht and called my husband and told him to get to the hospital ASAP. He called his parents to go pick up our other 2 children, Bethany & Daniel, and bring them to the hospital to meet their new little sister before they took her an hour away to prepare her for the surgery the following morning. We had the video camera out taking pictures of her with her brother and sister and when they came in. We accidentally didn't turn it off and left the camera rolling when we set it down.
The transplant team arrived at 6:09 pm that afternoon with a 6 person transport team. The head of the transport team told us that they would take her and get her ready for transport and bring her back by my room on their way out. During this time, they gave her a shot to keep the ductus arteriosus, a blood vessel that connects a baby's aorta and pulmonary artery while the baby is in the womb, open. If this were to close, they could loose her quickly. By 6:30 my baby was leaving the hospital for the hour drive to UVA with 7 wires and 7 tubes coming out of her little body. My husband and Father-in-Law followed them. I was not able to go because of my c-section and they wanted to keep an eye on me. My Mother-in-Law took Bethany & Daniel home with her and my Mom stayed at the hospital with me. During the night, I was up 5-6 times walking so I could leave as soon as they would let me, but couldn't bring myself to walk by the nursery, where my little girl was supposed to be.
The next morning started early. Steve called me at 6:00 to let me know that they were getting ready to take her back and that she had so many tubes and wires coming out of her that the only place that you could touch her was on her head. At that point, he started to break down, again, and I began falling apart, again. He had already met with the surgeon, Dr. Scott Lim, and the Dr. advised him of the procedure that they were about to perform and again went over the risks. They advised us that she could have to have a blood transfusion, that the vein could collapse and they would have to do the procedure in reverse or have to do open heart surgery and replace the valve if they were not able to use the balloon. Shortly after, the nurse came in and took a picture of Sydney and one of her with Steve, Jim and a family friend and then they took her off to surgery. Our lead pastor, Greg, went up to Charlottesville that morning and was there with Steve during the surgery.
After about 2 hours, we received the news that everything went well and she was going to be ok. They advised us that she received 2 blood transfusions sometime during the procedure. After she went to recovery, Steve was able to see her again and then he called me and let me know that he had seen her and she was doing well. They put her in the PICU so that someone could stay in the room with her. Back in my hospital room, my doctor, Dr. Nathan Rabhan, came in and checked my incision and asked how the baby was doing. To my surprise, no one had told him about her condition and that she was sent to UVA the previous evening. Needless to say, he was not happy about that. I asked Dr. Rabhan if I could go be with Sydney and he advised that he would probably let me leave the hospital a day early, but it would be the following day. Throughout the day, I called the PICU in Charlottesville to check on her and she was holding her own and doing very well.
On Friday, August 26th, I was released from the hospital and my mom took me to Charlottesville to see my baby girl. When I arrived, I found her in her little bed with an intubation tube and many tubes and wires attached to her. They were monitoring her blood pressure, heart rate and respiratory patterns. Because she was a newborn when she had the surgery, her lungs decided to stop working on their own and let the respirator work for them. Since that day was my birthday, Steve's parents brought Bethany and Daniel up to the hospital to see Sydney. I didn't want them to see her with all of the tubes and wires, but someone brought them back before I could say anything. What was amazing was that when she heard them start talking, her heart rate stabilized, her respiratory rate normalized and her blood pressure returned to a normal state. It happened within 5 to 10 seconds. The entire time they were there, everything was normal. It was incredible. After a short stay, we went down for dinner and cake in the cafeteria.
On Sunday, August 28th, Sydney was moved out of the PICU and into her own room in the children's ward. I remember the day well because it was the day that Hurricane Katrina hit. Finally, Sydney was able to go home on Thursday, September 1 st. She was seen at Dr. Albrecht's office a week later and everything was going well. By November 2005, Sydney's gradient had risen to approximately 45 mmHg and has held at that degree since then. We go to the cardiologist every 6 months and have gone to see him before each of her ear surgeries, to put/replace tubes in her ears and before her tonsils/adenoids removal. The following is a little bit of the notes Dr. Lim sent to Dr. Albrecht regarding Sydney's surgery. "As you know," said Dr. Lim, "(Sydney) is a newborn infant with critical valvar aortic stenosis, moderate-severe mitral insufficiency, and a dilated cardiomyopathy. The catheterization demonstrated a very dysplastic aortic valve with an annulus measuring between 6.5 to 7 mm. There was a gradient of 70 mmHg across the valve initially and we performed balloon valvuloplasty with a 6mm balloon. Post procedure there was a 25 mmHg residual gradient and mild to moderate aortic insufficiency." The cardiac catheterization report noted that during the procedure "Access was obtained without difficulty; right femoral artery...access was attempted but unsuccessful to the right femoral vein." This means that they were not able to access the right femoral vein because the balloon collapsed the vein. They had to go in via the left femoral artery and perform a right and antegrade transseptal left heart catheterization. Then they performed aortic angiography. At that point, they were finally able to cross the stenotic aortic valve in retrograde fashion. After this was complete, Sydney underwent a repeat antegrade transseptal right heart and left heart catheterization and a repeat aortic angiography. During the 24.6 minute fluoroscopic procedure they estimated that she lost 5 cc's of blood. Basically, what all of this medical terminology means is that she successfully underwent a balloon valvuloplasty reducing her gradient out of the critical range to a mild range. She was left with mild to moderate aortic insufficiency which will need to be followed.
To look at her now, she looks like a normal 23 month old, but she is not a normal little girl. There are things that she will have to go through that 'normal kids' won't have to do. Besides the future surgery(ies) to open and eventually replace her aortic valve, she will have to take antibiotics before going to the dentist and OB/GYN (eventually) so she won't get an infection that could nest in her heart valve and cause problems, she won't be able to do some sports that she may want to do and she will, most likely, have to take medicine every day of her life. Her heart will never be normal.
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Sydney Elizabeth
Sydney's story begins on New Year's Day, 2005 when I found out I was pregnant with my 3 rd child. My pregnancy was pretty normal. All of my ultrasounds were fine and there was no cause for concern, so we thought. Sydney was born on August 24, 2005 at 10:18 AM via a scheduled C-Section at Henrico Doctor's Hospital in Richmond, VA. She weighed in at 6 lbs, 6 ozs and was 19 inches long. Her APGAR scores were 9 and 9. Everything looked good. The pediatrician, Dr. Andrako, came in and checked her out and heard a murmur that was "slightly louder than what we like to hear" and called in Dr. Thomas Albrecht, MD, a pediatric cardiologist. Sydney was taken up to the nursery and was checked by the nurses, given a bath, and put under the warmer until Dr. Albrecht could get to the hospital.
At 4:30 pm that afternoon, Dr. Albrecht came into my room with a nurse. I was there by myself taking a nap and waiting for my newest little girl to be able to come to my room and get to hold her. I'll never forget what he said. "Your daughter has a problem with one of the valves in her heart and I have called a transport team from UVA Medical Center to come and pick her up and transport her there. She will have surgery tomorrow morning." Sydney has Aortic Stenosis (AS). Dr. Albrecht advised me that her Aortic Valve was a bi-cuspid, instead of a tri-cuspid, valve and was barely functioning and letting very little blood out of the valve to the Aorta. The procedure that she would undergo was called a balloon valvuloplasty, which is a procedure in which a narrowed heart valve is stretched open using a procedure that does not require open heart surgery. After he went over everything, he sent the nurse to bring Sydney to my room so I could say my "hello's and goodbye's". My mom walked in at the end of the conversation with Dr. Albrecht and called my husband and told him to get to the hospital ASAP. He called his parents to go pick up our other 2 children, Bethany & Daniel, and bring them to the hospital to meet their new little sister before they took her an hour away to prepare her for the surgery the following morning. We had the video camera out taking pictures of her with her brother and sister and when they came in. We accidentally didn't turn it off and left the camera rolling when we set it down.
The transplant team arrived at 6:09 pm that afternoon with a 6 person transport team. The head of the transport team told us that they would take her and get her ready for transport and bring her back by my room on their way out. During this time, they gave her a shot to keep the ductus arteriosus, a blood vessel that connects a baby's aorta and pulmonary artery while the baby is in the womb, open. If this were to close, they could loose her quickly. By 6:30 my baby was leaving the hospital for the hour drive to UVA with 7 wires and 7 tubes coming out of her little body. My husband and Father-in-Law followed them. I was not able to go because of my c-section and they wanted to keep an eye on me. My Mother-in-Law took Bethany & Daniel home with her and my Mom stayed at the hospital with me. During the night, I was up 5-6 times walking so I could leave as soon as they would let me, but couldn't bring myself to walk by the nursery, where my little girl was supposed to be.
The next morning started early. Steve called me at 6:00 to let me know that they were getting ready to take her back and that she had so many tubes and wires coming out of her that the only place that you could touch her was on her head. At that point, he started to break down, again, and I began falling apart, again. He had already met with the surgeon, Dr. Scott Lim, and the Dr. advised him of the procedure that they were about to perform and again went over the risks. They advised us that she could have to have a blood transfusion, that the vein could collapse and they would have to do the procedure in reverse or have to do open heart surgery and replace the valve if they were not able to use the balloon. Shortly after, the nurse came in and took a picture of Sydney and one of her with Steve, Jim and a family friend and then they took her off to surgery. Our lead pastor, Greg, went up to Charlottesville that morning and was there with Steve during the surgery.
After about 2 hours, we received the news that everything went well and she was going to be ok. They advised us that she received 2 blood transfusions sometime during the procedure. After she went to recovery, Steve was able to see her again and then he called me and let me know that he had seen her and she was doing well. They put her in the PICU so that someone could stay in the room with her. Back in my hospital room, my doctor, Dr. Nathan Rabhan, came in and checked my incision and asked how the baby was doing. To my surprise, no one had told him about her condition and that she was sent to UVA the previous evening. Needless to say, he was not happy about that. I asked Dr. Rabhan if I could go be with Sydney and he advised that he would probably let me leave the hospital a day early, but it would be the following day. Throughout the day, I called the PICU in Charlottesville to check on her and she was holding her own and doing very well.
On Friday, August 26th, I was released from the hospital and my mom took me to Charlottesville to see my baby girl. When I arrived, I found her in her little bed with an intubation tube and many tubes and wires attached to her. They were monitoring her blood pressure, heart rate and respiratory patterns. Because she was a newborn when she had the surgery, her lungs decided to stop working on their own and let the respirator work for them. Since that day was my birthday, Steve's parents brought Bethany and Daniel up to the hospital to see Sydney. I didn't want them to see her with all of the tubes and wires, but someone brought them back before I could say anything. What was amazing was that when she heard them start talking, her heart rate stabilized, her respiratory rate normalized and her blood pressure returned to a normal state. It happened within 5 to 10 seconds. The entire time they were there, everything was normal. It was incredible. After a short stay, we went down for dinner and cake in the cafeteria.
On Sunday, August 28th, Sydney was moved out of the PICU and into her own room in the children's ward. I remember the day well because it was the day that Hurricane Katrina hit. Finally, Sydney was able to go home on Thursday, September 1 st. She was seen at Dr. Albrecht's office a week later and everything was going well. By November 2005, Sydney's gradient had risen to approximately 45 mmHg and has held at that degree since then. We go to the cardiologist every 6 months and have gone to see him before each of her ear surgeries, to put/replace tubes in her ears and before her tonsils/adenoids removal. The following is a little bit of the notes Dr. Lim sent to Dr. Albrecht regarding Sydney's surgery. "As you know," said Dr. Lim, "(Sydney) is a newborn infant with critical valvar aortic stenosis, moderate-severe mitral insufficiency, and a dilated cardiomyopathy. The catheterization demonstrated a very dysplastic aortic valve with an annulus measuring between 6.5 to 7 mm. There was a gradient of 70 mmHg across the valve initially and we performed balloon valvuloplasty with a 6mm balloon. Post procedure there was a 25 mmHg residual gradient and mild to moderate aortic insufficiency." The cardiac catheterization report noted that during the procedure "Access was obtained without difficulty; right femoral artery...access was attempted but unsuccessful to the right femoral vein." This means that they were not able to access the right femoral vein because the balloon collapsed the vein. They had to go in via the left femoral artery and perform a right and antegrade transseptal left heart catheterization. Then they performed aortic angiography. At that point, they were finally able to cross the stenotic aortic valve in retrograde fashion. After this was complete, Sydney underwent a repeat antegrade transseptal right heart and left heart catheterization and a repeat aortic angiography. During the 24.6 minute fluoroscopic procedure they estimated that she lost 5 cc's of blood. Basically, what all of this medical terminology means is that she successfully underwent a balloon valvuloplasty reducing her gradient out of the critical range to a mild range. She was left with mild to moderate aortic insufficiency which will need to be followed.
To look at her now, she looks like a normal 23 month old, but she is not a normal little girl. There are things that she will have to go through that 'normal kids' won't have to do. Besides the future surgery(ies) to open and eventually replace her aortic valve, she will have to take antibiotics before going to the dentist and OB/GYN (eventually) so she won't get an infection that could nest in her heart valve and cause problems, she won't be able to do some sports that she may want to do and she will, most likely, have to take medicine every day of her life. Her heart will never be normal.
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