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After suffering a miscarriage, my husband and I were excited and nervous to find out that I was pregnant with our third child. Things were relatively normal with the pregnancy until the 20 week ultrasound. The ultrasound tech was unable to get a good look at Maddy's heart and spine due to her position. After 3 more ultrasounds over the next month, the ultrasound tech determined that the spine looked fine; however she was still unable to get a good four-chamber view of the heart. My OB decided to refer us to a Perinatologist so that he could try to get a better look at her heart. At this point, no abnormalities were suspected- they just wanted to get a better look to rule anything out. After our first ultrasound with the specialist, he said that her heart appeared normal but that there was a small amount of fluid around her heart. He had us come back in a month to do another ultrasound. At that next ultrasound, the sac of fluid had increased slightly and at that time, he noticed what he thought was a possible VSD. He referred us to a Pediatric Cardiologist to have another ultrasound done. The Cardiologist told us that Maddy did have a VSD and because of its size and location, would need be surgically closed within the first 4-6 months of life.
With all the talk about a heart defect, my thoughts began to drift towards Down's syndrome. I knew that it was common for Down's syndrome babies to have heart defects. I had talked to the Cardiologist about the possibility and he said that since all of my prenatal testing had come back normal that the chances were very low. He said that the only way to know for sure would be to do an Amnio. He did not feel that the chance of her having it was great enough to risk doing an Amnio. So he told me not to worry about it and I put the thought into the back of my mind.
For the rest of the pregnancy I worried every day about Maddy. I did not know what it was going to be like once she was born. I have always been a worrier and now knowing for certain that something was wrong with my baby made me even more scared. Most days I couldn't even believe that I was going to have a baby that she was actually going to be here. I think I tried to protect myself from getting too excited in case something went wrong.
I knew that until she was born and I could physically see with my own eyes that she was ok, I wouldn't be able to relax and not worry.
At 37 weeks pregnant, I went into labor and we headed off to the hospital. Once attached to the heart monitor, the doctor noticed that with every contraction, Maddy's heart rate would drop. Since I was already scheduled for a c-section two weeks from then, he decided to go ahead and do it early.
Maddy was born on April 4, 2008 at 8:06 pm. She came out screaming. I was over the moon with excitement. I had been waiting nine long months to hear her cry and I couldn't wait to see her. When the nurse brought her to the other side of the curtain where I could see her, immediately I knew that something was not right. Her face looked very different to me and my first thought was Down syndrome. I asked the nurse who was cleaning her up if she thought that Maddy looked like she had DS and she said that she didn't know and that the Pediatrician would have to take a look at her. Even though I was looking for an answer, I knew in my heart that she did have DS. After my c-section was over, they took me to the recovery room where my husband joined me again. I asked him if he thought she had DS and he said no. During this time, Maddy was in the nursery being cleaned up and my family was in the waiting room watching through the glass. I asked my husband to send my mom and sister in. I knew if they had already seen Maddy, they would be able to tell if they thought she didn't look right. They came in and told me how beautiful she was. I asked the question that I now know they were dreading to hear...."Do you think her face looks different?" At first my sister avoided the question. She didn't want to tell me. Then I asked it bluntly, "Do you think she has Down's syndrome?" My mom said "Yes." We all started crying.
At first of course I was in shock. Then I was angry. I thought all along in my mind that she may have DS and everyone told me not to worry.
The Doctor who delivered her came in and told me that he was pretty certain that she had DS but that the Pediatrician would have to make the call the next day. Our Pediatrician did come in the next day and confirmed it. My husband\s reaction to it all is what really got me through it all. He told me that our life was just on a different path now. We would love Maddy as we do our other two children and our lives were just going to be different- not worse.
The next day, the Cardiologist came to examine Maddy and told us that she had a complete AV canal defect. From what I understand about this defect, the center of the heart did not form properly, allowing blood to mix from one side to the other. As part of this defect, she also has 2 ASD's and a VSD. In addition to the main defect, she had a very large PDA that they were not sure would close on its own or not. We left the hospital with an appointment scheduled in 2 days to see the Cardiologist. They wanted to keep a close eye on the PDA to see if it did or did not close and to see how Maddy would do either way.
We were only home for five days before Maddy went into heart failure. She went from drinking her bottles like a champ, to me having to put formula in her mouth with a syringe. We went to the Cardiologist and she admitted Maddy to CJW to be put on tube feedings until she was able to be transported to UVA for surgery. It was decided that the best course of treatment for Maddy would be for her to have 2 surgeries. The first surgery was to close the PDA, (which was done on April 23 at UVA). The 2nd surgery, which is scheduled for the beginning of July (also at UVA), will be for the main heart defect.
Maddy is still on a feeding pump to gain weight and will be on it until after her next surgery when hopefully she will regain her strength and will be able to bottle feed. I have turned into a nurse/mom. I check her daily for swelling, weight gain (making sure she has gained enough but not too much) and have to be very in tune to her to see if she is behaving differently. I am in contact with her Cardiologist a few times a week and feel like I never know what to expect with Maddy from one day to the next.
Her Cardiologist has told me that once she has her surgery in July that she will be considered fixed and that the rest of our challenged with her will be Down syndrome related. We look forward to getting that behind her so that she can grow and be more like a "normal" baby.
Although our lives have changed dramatically since Maddy was born, I would go through it all again in a second to have Maddy here with us. She is such a sweet baby with a laid back personality. She has taught me to take each day at a time and to savor each victory no matter how small. I am so grateful for her- she is teaching me so much.
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Show all storiesAV Canal Defect
Madalyn Grace
After suffering a miscarriage, my husband and I were excited and nervous to find out that I was pregnant with our third child. Things were relatively normal with the pregnancy until the 20 week ultrasound. The ultrasound tech was unable to get a good look at Maddy's heart and spine due to her position. After 3 more ultrasounds over the next month, the ultrasound tech determined that the spine looked fine; however she was still unable to get a good four-chamber view of the heart. My OB decided to refer us to a Perinatologist so that he could try to get a better look at her heart. At this point, no abnormalities were suspected- they just wanted to get a better look to rule anything out. After our first ultrasound with the specialist, he said that her heart appeared normal but that there was a small amount of fluid around her heart. He had us come back in a month to do another ultrasound. At that next ultrasound, the sac of fluid had increased slightly and at that time, he noticed what he thought was a possible VSD. He referred us to a Pediatric Cardiologist to have another ultrasound done. The Cardiologist told us that Maddy did have a VSD and because of its size and location, would need be surgically closed within the first 4-6 months of life.
With all the talk about a heart defect, my thoughts began to drift towards Down's syndrome. I knew that it was common for Down's syndrome babies to have heart defects. I had talked to the Cardiologist about the possibility and he said that since all of my prenatal testing had come back normal that the chances were very low. He said that the only way to know for sure would be to do an Amnio. He did not feel that the chance of her having it was great enough to risk doing an Amnio. So he told me not to worry about it and I put the thought into the back of my mind.
For the rest of the pregnancy I worried every day about Maddy. I did not know what it was going to be like once she was born. I have always been a worrier and now knowing for certain that something was wrong with my baby made me even more scared. Most days I couldn't even believe that I was going to have a baby that she was actually going to be here. I think I tried to protect myself from getting too excited in case something went wrong.
I knew that until she was born and I could physically see with my own eyes that she was ok, I wouldn't be able to relax and not worry.
At 37 weeks pregnant, I went into labor and we headed off to the hospital. Once attached to the heart monitor, the doctor noticed that with every contraction, Maddy's heart rate would drop. Since I was already scheduled for a c-section two weeks from then, he decided to go ahead and do it early.
Maddy was born on April 4, 2008 at 8:06 pm. She came out screaming. I was over the moon with excitement. I had been waiting nine long months to hear her cry and I couldn't wait to see her. When the nurse brought her to the other side of the curtain where I could see her, immediately I knew that something was not right. Her face looked very different to me and my first thought was Down syndrome. I asked the nurse who was cleaning her up if she thought that Maddy looked like she had DS and she said that she didn't know and that the Pediatrician would have to take a look at her. Even though I was looking for an answer, I knew in my heart that she did have DS. After my c-section was over, they took me to the recovery room where my husband joined me again. I asked him if he thought she had DS and he said no. During this time, Maddy was in the nursery being cleaned up and my family was in the waiting room watching through the glass. I asked my husband to send my mom and sister in. I knew if they had already seen Maddy, they would be able to tell if they thought she didn't look right. They came in and told me how beautiful she was. I asked the question that I now know they were dreading to hear...."Do you think her face looks different?" At first my sister avoided the question. She didn't want to tell me. Then I asked it bluntly, "Do you think she has Down's syndrome?" My mom said "Yes." We all started crying.
At first of course I was in shock. Then I was angry. I thought all along in my mind that she may have DS and everyone told me not to worry.
The Doctor who delivered her came in and told me that he was pretty certain that she had DS but that the Pediatrician would have to make the call the next day. Our Pediatrician did come in the next day and confirmed it. My husband\s reaction to it all is what really got me through it all. He told me that our life was just on a different path now. We would love Maddy as we do our other two children and our lives were just going to be different- not worse.
The next day, the Cardiologist came to examine Maddy and told us that she had a complete AV canal defect. From what I understand about this defect, the center of the heart did not form properly, allowing blood to mix from one side to the other. As part of this defect, she also has 2 ASD's and a VSD. In addition to the main defect, she had a very large PDA that they were not sure would close on its own or not. We left the hospital with an appointment scheduled in 2 days to see the Cardiologist. They wanted to keep a close eye on the PDA to see if it did or did not close and to see how Maddy would do either way.
We were only home for five days before Maddy went into heart failure. She went from drinking her bottles like a champ, to me having to put formula in her mouth with a syringe. We went to the Cardiologist and she admitted Maddy to CJW to be put on tube feedings until she was able to be transported to UVA for surgery. It was decided that the best course of treatment for Maddy would be for her to have 2 surgeries. The first surgery was to close the PDA, (which was done on April 23 at UVA). The 2nd surgery, which is scheduled for the beginning of July (also at UVA), will be for the main heart defect.
Maddy is still on a feeding pump to gain weight and will be on it until after her next surgery when hopefully she will regain her strength and will be able to bottle feed. I have turned into a nurse/mom. I check her daily for swelling, weight gain (making sure she has gained enough but not too much) and have to be very in tune to her to see if she is behaving differently. I am in contact with her Cardiologist a few times a week and feel like I never know what to expect with Maddy from one day to the next.
Her Cardiologist has told me that once she has her surgery in July that she will be considered fixed and that the rest of our challenged with her will be Down syndrome related. We look forward to getting that behind her so that she can grow and be more like a "normal" baby.
Although our lives have changed dramatically since Maddy was born, I would go through it all again in a second to have Maddy here with us. She is such a sweet baby with a laid back personality. She has taught me to take each day at a time and to savor each victory no matter how small. I am so grateful for her- she is teaching me so much.
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