HELPFUL INSIGHTS

When a parent learns that, their child may have a disability, syndrome or disease they are in shock. It may be overwhelming to parents at first. However, I have some helpful hints on miscellaneous things that may help you out.

First, have a pen and a notebook ready to write down all your questions. Leave enough space in-between to put your answer down next to your question. Bring your questions to your next doctor’s visit and ask away!

Second, read any material that a doctor’s office may have provided to you about your child’s diagnosis. However, what happens if you were not provided any reading material? I would then suggest going to a Medical website or to the NIH Website (National Institute for Health).

Third, in order to deal with your child’s diagnosis, you must be able to make out what it exactly means. As you all know, Heterotaxy is very complex and it is extremely hard to understand. I would suggest breaking it all down. Take one-step at a time. Children with Heterotaxy may have other syndromes or problems associated with it.

Forth, keep a journal to put into words what this syndromes means to your family. How will it affect it your child? What does it mean to you? Who are your child’s doctors? What types of tests will my child need? Will my child need immediate surgery? What types of meds will your child are taking? Is there a Children’s Hospital nearby? What doctors will my child me seeing? Most of all, anything else you can think of.

Sixth, learn what your child’s rights are: your child maybe eligible for Social Sec. Benefits or insurance benefits

Seventh, your child should have a Medical Alert Bracelet. You will need your child's information handy when contacting Medical Alert.

Eighth, sit down with your husband and decide on an approach on how to tell your family and close friends about your child condition. You may need their help after your child is born or after any surgeries, your child may have. Also keep in mind, if you child is Asplenia or Functional Asplenia you may want to limit the amount of contact your child has.

Most but not least, it is important for you to be able to describe what your child’s syndrome is. This will insure that you are knowledgeable and accurate as you seek out specialty doctors to help your child with different areas of his syndrome. Ask many questions when you do not understand! Ask the doctor to explain further! Tell them when you do not understand what they are saying!