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Today it's been 5 years since my son Matthew's A.V. Canal repair. I remember the nurses: Shannon, Jaime, and Patrick....They were so good with Matthew and with my husband and I.
If it wasn't for Children's Hospital and the Cardiac wing he wouldn't be here. Thank you all for what you have done for us and giving him a chance to grow in front of our eyes! Thank you Dr. Mah, Dr. Baird, and Dr. de Ferranti we owe you the world.
5 years ago today, I placed my one week old son in Dr. Emani's hands to repair his COA. I remember it like it was yesterday, and I'm thankful every day for the care we received at the Heart Center at Boston Children's Hospital.
1 year ago today Dr Baird performed open heart surgery on Cayman. It did NOT slow him down. Today his heart is as good as new and he barely even has a scar. Thank you Dr Baird and everyone on the cardiac floor at Boston Children's Hospital.
Two years ago today we were at Boston Children's Hospital and our daughter, Emily, was having an aortic stent placed. We were told it would have to be replaced by the time she turned 2 (which was last June) but its still in place and working beautifully. We thank God every day for the amazing work of Dr. Gerald Marx and Dr. James Lock.
This weekend we celebrated our beautiful daughter, Mikayla's 1st birthday and that’s thanks to the amazing surgeons and staff on the 8th floor!! Mikayla was born with a rare diagnosis of Pentalogy of Cantrell which included several heart defects.
"Congenital" describes any condition that exists at birth. Many congenital conditions are not identified until days, weeks, months or even years after a baby is born.
Congenital heart disease (CHD) refers to differences in the heart's structure or function that occur during development.
A common structural problem is an atrial septal defect (ASD), a hole in the heart between the atria, or top two chambers of the heart.
A common functional problem is cardiomyopathy, a set of disorders that cause the heart's wall muscles to become either too thick, too thin, or too stiff.
About one out of every 100 babies born has a congenital heart defect. In most cases, it’s not possible to identify a specific factor that caused the problem. Among the known causes of congenital heart defects are genetic factors, environmental conditions (e.g., a mother's exposure to certain prescription medications, chemicals, or maternal diseases) and a combination of both genetic and environmental factors.
Cardiovascular genetics examines the relationship between genetics and its effect on the heart's anatomy and function. We seek to identify which genes are the primary players in building the heart and its blood vessels.
In some families, a heart defect might be identified in only one person. In other families, heart defects may occur in multiple family members. In either case, genes, environmental factors or both can play a role. It's the role of the cardiovascular genetics clinic to sort out whether environmental conditions could reasonably explain the occurrence/recurrence, if genes are a more likely explanation, or if it is some combination of the two.
If the diagnosis is still uncertain at the end of the visit, we may recommend specific laboratory studies.
The clinic team will make specific recommendations about long-term follow-up including frequency of follow-up visits, testing and subspecialty consultations.
Your child's care team will depend on her diagnosis and specific issues involved. These might include specialists in cardiology and genetics, as well as other medical, surgical, behavioral and mental health providers.
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