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Mended Little HeartGuide

Diagnosis 3 In The 44 Double outlet right ventricle (DORV) 44 Double outlet left ventricle (DOLV) • Transposition of the great arteries (TGA) • Truncus arteriosus • Interrupted aortic arch • Children with syndromes associated with CHD 44 Down Syndrome 44 22q 11 Deletion 44 Noonan Syndrome 44 Williams Syndrome How do I find out if my child has a neurodevelopmental issue? If you notice problems with your child’s development at any point, contact their primary care doctor or cardiologist right away. Early detection and treatment of issues is important. All children in the high-risk category should be screened for developmental disabilities at 12 to 24 months, again at three to five years and again at 11 to 12 years of age. Your child’s primary care doctor or pediatrician may be able to conduct this screening during a normal wellness visit. Neurodevelopmental pediatricians are also able to perform these screenings, and some children’s hospitals have specialized clinics for screening and treating neurodevelopmental issues in children with CHD. The Development and Education form in this HeartGuide can help you keep track of your child’s progress and screenings. What resources can help me get the best care for my child? Most cities, counties and states have resources to help children with developmental delays and disabilities. Before you even leave the hospital, your hospital’s social worker may be able to recommend resources such as physical therapy, occupational therapy and early intervention services if needed. Record these on the Development and Education form in this Mended Little HeartGuide. If you are connected with a local support group, other parents and caregivers in that group can also guide you to resources and programs in your area. Many school systems have a process to help detect delays and disabilities in school-aged children. If you have concerns about your child’s academic performance, ask for a meeting to discuss any problems you are seeing. Your state’s Department of Education website will help you find educational resources and provide you with information that can help guide you through the process of handling any special educational needs your child may have. There are also probably educational consultants in your area who can work with your child and help you coordinate the services that he or she needs. Finally, there are helpful resources for parents with disabilities at the Center for Parent Information and Resources website and on the Special Education Advisor website. Don’t be discouraged. Parents and caregivers often find it hard to come to terms with the fact that their child may have neurodevelopmental issues, but please don’t feel discouraged. Most children with CHD — even those with the most severe forms — appear no different than other kids their age. They are usually happy, welladjusted children. Being aware of the risk of neurodevelopmental issues will help your child get the services he or she needs to have the highest chance of success. 1 General Information 2 Prenatal Hospital 4 Living With CHD 5 Forms 73


Mended Little HeartGuide
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