Medical Provider archives

A letter to your doctor

January 1, 2014 in Birth Plans, Comments, Medical Provider

As you prepare for the birth of your baby, you may have heard some personal stories of moms who experienced some awkwardness in the delivery room or later in the hospital. It may be helpful to tell your doctor what kinds of statements make you comfortable or uncomfortable, with suggestions as to how to talk to you after your baby is born. Ask your doctor to share it in advance with the L & D staff, and bring a few copies with you just in case. Experienced moms, did you write letters to your doctors? Expectant moms, would you like to share a draft of your letter and receive some advice?

DownSyndromePregnancy.org has a sample letter from one expectant parent who combined her concerns for the pregnancy, her questions about care and delivery, and her requests for appropriate language into one letter to her doctor.  You may chose to address questions or concerns orally, or write down your thoughts.  Your desires and concerns may differ drastically from our sample.

Positive support from friends, family, and health care professionals

August 26, 2013 in Comments, Friends and Family, Medical Provider, Support

Katie Ryder with her grandmother Lona Kewley

We would like to hear from both experienced and expecting parents about the wonderful support they have received from friends, family, and health care professionals. We spend a great deal of time helping parents cope with negative or stinging comments, mainly because we do not have built-in coping mechanisms for those unexpected events. Sometimes when in the stress of pregnancy post-diagnosis, a negative comment can send us reeling, and may actually drown out the many positive comments we hear.

However, there are extraordinary people out there. People who rise to the occasion and give a piece of themselves to give genuine, loving support. Focusing on their words and their actions, their support can help build our confidence and reinforce the knowledge that the world is a welcoming place for our children.

Sometimes that support comes from friends and loved ones who dive in to learn more about Down syndrome and the available resources so that they understand our children a little better and how to help them achieve their potential. Other times that support comes in the form of friends visiting the hospital and bringing blankets, stuffed animals, and candy to the Newborn Intensive Care Unit. That support can also include comments that welcome our children into the world, like the nurse who says “Congratulations! You’re baby is precious,” or comments that shape our understanding about disability, like a friend who shares, “My cousin has Down syndrome, and she’s an important part of our family. We love her.”

Please share in our comments the words, actions, or attitudes of those around you who gave the best of themselves and in turn helped you cope or look forward to a bright future. If you are on Facebook, you might also want to post your comment to your Facebook status and link to this blog post. Or post a thank you (sample linked below) in your Facebook status.

Booklet for Friends and Relatives: HERE
Sample thank you letter to the person you appreciate: HERE

(Note: We recognize that some things that bring comfort to some people may not help others because of the diversity of the personalities and beliefs of our expectant parents. For general guidelines, see our Relatives booklet linked above. Supporters should tailor their comments and support to match what they know about the personalities of the expectant parents.)

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?

This post was originally posted on October 7, 2010.  We hope to see even more input to help expectant parents.

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.

(original post March of 2011)

Preparation

January 18, 2012 in Birth Plans, Breastfeeding, Friends and Family, Health Issues, Medical Provider, Support

Many of our expectant parents agreed to diagnostic testing in order to “prepare” for having a child with Down syndrome.  Yet post-diagnosis they may not be sure exactly what they should be doing to prepare.  For those of you who had a prenatal diagnosis, share what steps you took.  For those of you who had higher chances but skipped the amnio, were there things that you did to prepare “just in case”? For all of you, are there things you wish you had done? Are there things you wish you had not done?

(Original post December 2, 2010)

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.

(Original Post November 6, 2010)

New healthcare guidelines (pediatrics)

July 29, 2011 in Future, Health Issues, Medical Provider, News, Resources

The American Academy of Pediatrics has released new guidelines for pediatricians who have patients with Down syndrome. These guidelines are updated from those provided in our pregnancy book, so expectant parents should have a copy of the new guidelines and provide a copy to their pediatrician if he or she does not have them.

You can download a PDF of the new guidelines here: LINK HERE.

AP story on new prenatal testing; DSP mentioned

June 15, 2011 in Blog, Book, Medical Provider, News, Resources

This week AP reporter Malcolm Ritter wrote a thoughtful story on the upcoming non-invasive diagnostic prenatal testing and the related ethical concerns. Mr. Ritter quoted our own Nancy McCrea Iannone, and mentioned Down Syndrome Pregnancy as a resource for those planning to deliver a baby with Down syndrome. Ethical concerns of various experts, including Dr. Skotko, were explored, and for our expectant parents ready to learn more about these issues it is worth reading.

Particularly insightful was the reporter’s choice to open and close the story with the personal experience of Down Syndrome Pregnancy “graduate” Erin Witkowski. While the larger ethical concerns are important for us as a society, Erin’s story illustrates that, at heart, testing choices are very personal, and influence the “story” of each and every family. We respect the individuality of each family’s path and are proud to serve those families who have joined the Down syndrome community in the prenatal stage.

As we contemplate ethical issues, it is imperative that we applaud the efforts and successes of those involved in ensuring that every expectant couple receiving a diagnosis also receive up-to-date, unbiased, and medically approved information. We urge all stakeholders in prenatal testing to embrace the diagnosis booklets authored by Stephanie Meredith and distributed through Lettercase. A product of the historic “consensus group,” the Lettercase booklets received approval from representatives of the national Down syndrome groups and many major medical groups. These booklets are the gold standard for prenatal Down syndrome diagnosis, and anyone invested in informed decision-making should support these booklets.

Down Syndrome Pregnancy, Inc. provides that vital second stage of support, ensuring that those expectant couples choosing to welcome a child with Down syndrome have as much information and support as possible.

AP story HERE
Lettercase website HERE
Dr. Skotko’s website HERE
Community member reaction HERE

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