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Congenital heart defects (CHDs) are a problem with the heart that is present at birth. 1 in 100 children are born with a CHD, which is about 4o,000 babies every year! CHDs are the #1 cause of birth related deaths and 1/3 of children diagnosed will need life-saving surgery within a year of being born.
Most CHDs have no known cause (88%), but 6% are due to chromosomal abnormalities, 4% are due to single gene defects, and 2% are from environmental factors.
During our 18 week anatomy scan, we discovered that Nora had a congenital heart defect called Atrioventricular Septal Defect (also known as Atrioventricular Canal Defect or AVSD). AVSDs account for about 4% of all heart defects and are most common in children who have Downs Syndrome. We decided to have an amniocentesis to better prepare for possibilities of chromosomal abnormalities, but were very fortunate to come out the other side without diagnosis. We continue to pray that she will have no single gene defects.
Doctors anticipate that she will be able to remain at home after birth until she is strong enough for surgery, which will be some time between 3-6 months of age (as long as no complications arise). We have an incredible surgeon at U of M Motts Children’s Hospital, Dr. Richard Ohye. He is a ROCK STAR and we are so happy to have him providing her care. Post surgery, she will be in the hospital for about a week for observation and recovery, and will continue recovery at home for about 5 more weeks. If all is well, she will be back to regular activities 6 weeks post op.
The biggest hurdles for her at the moment are weight gain and regular breathing. Children with AVSD typically pump more blood to the lungs than to the body, causing them to breathe rapidly. As a result, they struggle to eat, which effects weight gain. When more blood pumps to the lungs, the lungs fill with fluid and regular medications have to be administered to minimize the effects of congestive heart failure and keep her from getting sick. If she cannot put on weight or struggles to breathe, she will need surgery sooner. We will know more as time progresses, but would really appreciate some prayers to keep her healthy and thriving for as long as possible.
For more detailed information about AVSD, visit the C.S. Mott page here.
Most CHDs have no known cause (88%), but 6% are due to chromosomal abnormalities, 4% are due to single gene defects, and 2% are from environmental factors.
During our 18 week anatomy scan, we discovered that Nora had a congenital heart defect called Atrioventricular Septal Defect (also known as Atrioventricular Canal Defect or AVSD). AVSDs account for about 4% of all heart defects and are most common in children who have Downs Syndrome. We decided to have an amniocentesis to better prepare for possibilities of chromosomal abnormalities, but were very fortunate to come out the other side without diagnosis. We continue to pray that she will have no single gene defects.
Doctors anticipate that she will be able to remain at home after birth until she is strong enough for surgery, which will be some time between 3-6 months of age (as long as no complications arise). We have an incredible surgeon at U of M Motts Children’s Hospital, Dr. Richard Ohye. He is a ROCK STAR and we are so happy to have him providing her care. Post surgery, she will be in the hospital for about a week for observation and recovery, and will continue recovery at home for about 5 more weeks. If all is well, she will be back to regular activities 6 weeks post op.
The biggest hurdles for her at the moment are weight gain and regular breathing. Children with AVSD typically pump more blood to the lungs than to the body, causing them to breathe rapidly. As a result, they struggle to eat, which effects weight gain. When more blood pumps to the lungs, the lungs fill with fluid and regular medications have to be administered to minimize the effects of congestive heart failure and keep her from getting sick. If she cannot put on weight or struggles to breathe, she will need surgery sooner. We will know more as time progresses, but would really appreciate some prayers to keep her healthy and thriving for as long as possible.
For more detailed information about AVSD, visit the C.S. Mott page here.