Pregnancy post-diagnosis is often a blur of medical appointments, especially late in pregnancy. Expectant parents receiving co-care from several health care professionals may see multiple doctors in an obstetrics practice and multiple doctors in a maternal-fetal medicine practice. There may be a lists of tests, lists of questions, scraps of paper with phone numbers. We highly recommend making an organizational plan to keep track of all of your medical information during pregnancy. Parents should purchase a a binder/ notebook or create a system on your phone or electronic tablet to keep track of dates, medications, doctors, tests, results, questions, and answers. Include your birth plan as well. Ask your doctors for copies of your medical records, especially the karyotype, which shows the baby's chromosome count. You may also want to start a binder for the baby, starting with the karyotype and a summary of the pregnancy. Keep track of all medical personnel and tests connected with the baby in this binder. Some items which may be helpful to start are the following:
Our ResourcesSee also: Understanding First Year Medical Issues chapter in our book, "Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome."
More Resources/ArticlesThe first thing you need is the updated Down syndrome health guidelines. These guidelines include a summary of different health issues that can occur in children with Down syndrome and treatment recommendations. One of the most helpful tools in these guidelines is the appendix that includes recommended screening and evaluations organized according to age. Blogger Ria provides amazing advice on creating an organizational system, with extremely helpful links and step-by-step instructions.
Ria says, "It certainly is a lot of information to keep track of before and after baby is born. Like Missy said, you have to customize it to what would work for you. Being a Type A personality myself, I made a medical record binder for my 2nd child, Elizabeth, who does not have any extra chromosome, but it’s nice to be able to keep track of doctor visits, family history, immunizations, tests, Rx and non-Rx medications all in one folder. Anyway, having complete records at your fingertips also tells doctors that you are on top of things and a reminder to them that you are the expert on your child."There are also organizational apps available, including the My Kid's Health App that allows you to put shot records, growth charts, appointment cards and medical records in your iPad. Another organizational resource is the "Care Notebook" strategy created by the National Center for Medical Home Implementation.