What every parent should know when giving birth to a child with Apert Syndrome

Here are a few tips that may help when your have a child with Apert from Tania Weissman.

  • Make sure your child has been properly diagnosed, not only with Apert Syndrome but also with the variety of congenital malformations that can occur during gestation. Your baby will require follow up by sub-specialists, in a medical center with Cranio Facial, Orthopedic and Respiratory experts to name a few.
  • Request that the hospital discharge you with instructions as to what kind of therapy your child will need. Often and at first, these include: physical therapy, occupational therapy, and speech therapy. A lot of children with Apert Syndrome are born with co-morbid conditions such as ADHD, ADD, ASD, epilepsy. Following up on your child’s development is crucial in his or her two first years of life and will set a pattern of care that will greatly benefit your child in the long run.
  • Get in touch with a social worker, someone who can help you with insurance and benefits you may be entitled to. There are programs for stay at home parents who need to care for their sick child and cannot work.

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  • Every option is worth looking into and can make things easier while caring for your newborn. Ask your social worker what institution can assess your child’s cognitive development and help you find the right school. Ask for an advocate to help you represent your child’s needs in the school system.
  • Connect with other parents and get the emotional support you need. Your child needs you now more than ever.

Written by Tania, leave her a comment here.

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