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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.
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What kind of developmental problems are most common in children with heart disease?
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.
My child is often very tired and can’t always keep up with his/her peers. Is this typical of children with heart disease?
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.
How is this program different from other developmental programs in the hospital?
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.
My pediatrician says my child is doing well. Do I still need to come?
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.
My child is already receiving early intervention services. Do I still need to come?
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.
My child has an IEP and is receiving services but we aren’t seeing progress. Can you help?
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.
My child has a history of heart disease but I’m worried he/she may also have autism. Can you help evaluate him/her to see if he/she has an autism disorder?
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.
My child has feeding and/or sleep difficulties and often refuses to eat and rarely sleeps through the night. Can you help?
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.
My child is very anxious. He/she is worried all the time and bites his/her nails. Will your program be of help?
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.
My child’s teacher says that he/she is disorganized and can’t keep track of his/her work. How common is this of children with heart disease?
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.
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