Organization and Preparedness

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 Resources

See also: Understanding First Year Medical Issues chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”

More Resources/Articles

The 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.

Parent Quotes

Reflections from parents about different organizational strategies they used and what was most effective for them:

From Missy, explaining how organization systems made her feel less overwhelmed once she figured it out:

I wish I had had this list early on in my life with Violette. Once I learned how to get my papers organized and reviewed the health checklists, charts it gave me a feeling that I was more in control, and more on top of what I was doing for Violette. Much of the organization has become second nature to me now, and I feel much less overwhelmed by my lack of organization.

From Amy, talking about the importance of managing contact lists and using a notebook:

I also wish I’d had this list when I was pregnant. We moved from MA to NJ 8 weeks before Abigail was born, and so the stress of not having anything at my fingertips really got to me. Having a planner and a notebook for questions would have helped a lot.

Now, I keep all of Abigail’s school files together and because our health care company has electronic medical records and a patient information center on their website, that helps significantly in keeping on top of upcoming appointments, medications etc. We just moved again 5 months ago to Oregon, so all her docs are different, and I just compiled a list of names and contact numbers readily available to me in case I need to reach a specialist quickly.

From Megan, explaining how her organization system evolved over the year:

In the early stage of our diagnosis (seven months before giving birth!) I just threw all the important papers/notes/etc in a folder. That was literally ALL I could handle. I eventually organized everything in an accordion folder.

Now I use a giant 3 ring binder – one tab for medical, one for medicaid, and one for all the therapy/IFSP notes.

From Stephanie, describing how she uses an individualized electronic system to manage all of her child’s records:

My husband and I use an electronic calendar with email or text reminders to remember appointments. It’s all tied together in our iCloud so that we can get reminders on our phones, tablets, and computers. We’re a real techie family, so this works best for us. We also keep all applicable documents in our Dropbox account organized in folders for each child, and we take pictures of business cards and other forms to keep them in those folders too. Ours is a makeshift digital solution based on what we actually use regularly.