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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.
The clinic's team of cardiovascular specialists and geneticists provides the following clinical services:
Syndrome diagnosis, genetic counseling and management of malformation syndromes including:
Second opinion consultations and genetic evaluation for the following conditions:
Genetic evaluation and counseling for familial or potentially familial conditions:
The Cardiovascular Genetics Clinic at Boston Children's Hospital provides clinical care, information and resources for individuals and families with cardiovascular and genetic conditions.
The clinical team offers specialized services and consultation to cardiology patients in the following syndrome-specific clinics:
Affiliated Programs at Boston Children's Hospital:
The Williams Syndrome Clinic provides clinical care, counseling and information for individuals and families diagnosed with Williams Syndrome.
Williams Syndrome is a rare genetic condition (estimated to occur in 1/20,000 births) that causes medical and developmental problems.
For more information on Williams Syndrome, including common characteristics, visit the Williams Syndrome Foundation website.
Most families choose to visit the clinic soon after their child is diagnosed.
Many children are diagnosed with Williams Syndrome in infancy. If a child is diagnosed within the first 12 months of life, there is not a pressing need to have a full clinical workup. It is important, however, that the child have a medical exam.
This is an important time, as a child begins to approach many early developmental milestones such as walking, talking and toilet training. At this time, the clinic team can assess an early intervention program and make recommendations as parents begin to consider schooling and daycare options for their child.
To schedule a visit to the clinic, contact Liz Berryan at 617-355-8794.
The Williams syndrome clinic staff is made up of a multidisciplinary team of specialists including:
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