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There are many ways you can help children and their families get the care they need.
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 complexity of a child’s heart problem, including length of stay in the hospital, are related to a his/her rate of developmental progress.
Infants and very young children are at risk for delays in the onset of speech and motor milestones.
Early elementary school years are characterized by higher than average risk for reading difficulties and problems with fine motor skills such as imprecise writing and drawing skills.
Middle school children are challenged with more complex math learning, formulating language (“finding words”), maintaining attention, and planning and organizing (executive functions).
As a group, children with a history of CHD are more likely to have social adjustment difficulties, reduced ability to “keep up” with their classmates during physical activities, and having difficult completing their work in a timely manner.
Parents very often report their child’s problems with fatigue and reduced endurance. Participation in physical education classes and recreational sports may require accommodations that provide clear directions for teachers and coaches. Your child’s cardiologist can determine if your child’s condition requires accommodations.
The Cardiac Neurodevelopmental Program staff is specifically trained to how cardiac conditions affect development. Assessments in the program rely on input from a multidisciplinary approach (cardiology, genetics, neurology, psychology, and special education) to evaluation and interpretation of results.
Children with CHD are at substantially increased risk for developmental delays, academic difficulties, social adjustment challenges and behavioral disorders such as feeding and sleeping problems. There is a better chance for recovery if the problems are identifies as early as possible. “Wait and see” is not a recommended approach to addressing developmental concerns for children with a history of severe CHD. If you are concerned about any aspect of your child’s development, you should seek a second opinion consultation sooner rather than later.
The Cardiac Neurodevelopmental Program is not the same as early intervention. Early intervention provides developmental screenings and community based developmental supports for children at risk. The Cardiac Neurodevelopmental Program focuses specifically on the developmental risks associated with having heart disease as a young child. The Cardiac Neurodevelopmental Program provides state of the art neurodevelopmental assessments, parent and school consultation, and short terms treatment for behavioral disorders such as sleeping and feeding problems.
Yes. Many of the families we work with come to our program just for this reason. We are often asked to review IEP’s and recommend changes, if needed. We typically serve as a second opinion the need for changes in IEP’s.
Rates of autism appear to be increased among children with congenital heart disease. Evaluation of children with CHD for whom there is a question of autism is a specialty of our program staff. Our work includes helping families and school develop appropriate IEP’s for children who have both CHD and autism.
Yes. Feeding and sleeping difficulties are the most common behavioral problems in children with CHD. We evaluate and treat both feeding and sleeping disorders. We can work directly with you to treat these difficulties, or serve as a consultant to your community based providers.
Anxiety is frequently seen in families whose children have experienced life threatening problems and an important component of our evaluations. Parents also often present with anxiety after their child’s surgery is over. We offer short term treatment for child and family anxiety concerns and/or referral for ongoing treatment, if needed.
Organizational problems are a hallmark for children with CHD. They are usually part of a broader profile of learning problems. Evaluation of organizational difficulties is a critical component of neurodevelopmental assessments for children with CHD.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”