Post-Diagnosis Health archives

The emotional impact of diagnosis

March 19, 2014 in Diagnosis, Emotions, Post-Diagnosis Health


Many moms report that the most difficult part of being the parent of a child with Down syndrome is the diagnosis and the immediate aftermath. Moms report thoughts and emotions they never thought they would have. Most are not prepared for the onslaught of emotions, and the intensity shocks them. Have you just received a diagnosis? What are you feeling? If some time has passed, how did your feelings change? If your baby has been born, how do you feel now? Do you believe receiving a prenatal diagnosis has helped your state of mind now that you have your baby? Do you regret your decision to find out in advance?

CoorDown in Italy also produced this beautiful video for pregnant moms featuring individuals with Down syndrome. Their message to you expectant moms who may be struggling to understand a diagnosis:

Watch this video featuring people with Down syndrome and their message to future moms by CoorDown in Italy.

In addition, you can also read letters from individuals with Down syndrome to to new members of the Down syndrome community at the Congratulations Project. These letters are designed to inspire, encourage, welcome and, most importantly, congratulate new parents and siblings of a child with Down syndrome.

Twins

January 9, 2013 in Birth Plans, Future, Health Issues, Post-Diagnosis Health, Resources, Siblings

We sometimes have expectant parents awaiting the birth of twins, and one or both babies have Down syndrome.  If you have twins, will you help our expectant parents?  How was your birth plan different?  Did the logistics of a twin birth cause extra complications? Are there any differences in parenting that you see? In what ways is it more difficult?  In what ways is it beneficial?  If you have a blog or website that pertains to twins and Down syndrome, please share.

We will start off suggested resources by mentioning Jen Graf Groneberg’s Roadmap to Holland.  Jen gave birth to twin boys, one with Down syndrome, and wrote of her early experiences.

Another resource is a blog by Eric Waksmunski, dad to twin boys with Down syndrome.

Another guest post by Vicki Vila on Amy Julia Becker’s “Thin Places” blog gives a unique and insightful perspective about fraternal twins where one has Down syndrome and the other does not. Vicki Vila’s blog can be found at www.modernmessy.wordpress.com.

Let’s hear some more resources, and any personal experience.

Vicki Vila

Your prenatal care

May 4, 2012 in Medical Provider, Post-Diagnosis Health

Many parents choose to receive a diagnosis in order to receive more prenatal care, yet the prenatal care for a Down syndrome pregnancy varies throughout the country. What has been your experience? Did you feel you were receiving adequate care? Did you wish your doctor would be more aggressive? Were you overwhelmed with the tests and wish they would step back?

Organization & Preparedness 101

March 23, 2012 in Birth Plans, Future, Health Issues, Medical Provider, Post-Diagnosis Health

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 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, tests, etc. connected with the baby in this binder.  Some items which may be helpful to start are the following:

The Down Syndrome Growth Charts

The Down Syndrome Health Checklist
(The health guidelines have been recently updated – download HERE)

The Down Syndrome Developmental Charts

Blogger Ria provides amazing advice on creating an organizational system, with extremely helpful links and step-by-step instructions.

Calling all heart moms!

August 18, 2011 in Health Issues, Medical Provider, Post-Diagnosis Health

Does your unborn baby have a heart defect? Or are you an experienced mom who has faced her baby’s open-heart surgery? Many expectant parents are worried about the time period between birth and surgery. Many worry about the symptoms associated with heart defects, the medications, and feeding issues. Newborn hospital experiences may vary. Cardiologists may differ in their approaches to public outings and germ exposure. Expectant moms, what are your questions? Experienced moms, share your stories.

Down syndrome Blogs