Prenatal

Jett says, "Welcome!"

I'm so glad you made it here! This is a great time to have a healthy, happy baby with T21. Your baby's future has never looked better (and is looking better every day).
I'm sure you haven't heard anything very promising about the prognosis of your child, but they are talking about children who are "untreated" or without supplementation and proper therapy (the free therapy rarely works). To get an idea of what a "treated" child with Down syndrome is like, check out this video of a family who is very active in their child's health and education: Video of 4 year old Lucas and family.

I would love to tell you that your physician will know exactly what to do to best care for your baby. Unfortunately, that is probably not the case. Although your physician may not yet know the best way to treat many aspects of your baby's development, which I understand is a scary thought, rest assured that I will share with you what is working for my son, Jett. And I will help you find an open minded doctor and will help you get in touch with experienced moms, clue you in to great resources and keep you abreast of the most recent research and brainstorming about Down syndrome.

You are not alone. You have all the resources you need to be a successful parent. You will be empowered to give your baby the best possible future with the best possible treatment. Your baby's future is in good hands -- yours!
Jett seriously curious at 3 weeks old

I know the first thing you have to get under control is your emotions. It's okay to cry, to be angry, to blame yourself and others. Please accept all of these feelings as a normal, healthy reaction to disturbing news. This is an uncertain time for you, full of the unknown. Allow yourself to grieve and vent and ride out the emotional roller coaster. Talk to friends and family (but keep in mind they understandably have the old stereotype in their mind). Write in a journal. You don't have to share it, you don't have to read it ever again. In fact, you can even rip out the pages and throw them away. But, do acknowledge your feelings and express them so that you can move forward. 
 
It's natural to feel overwhelmed.... There's a lot of information here. But the biggest blessing of your early diagnosis (or early journey) is the extra time you have to prepare. You can't learn all of this in one day (or month or year...)! I'm hoping to save parents the time and anguish of sorting through all the information that's out there on T21. I want to allow you to spend quality time enjoying and nurturing your child rather than spending the time that I already have going through piles of research.

I am open minded and update blog posts according to my latest findings, but I do have specific beliefs about what works best and what doesn't and I only share what I either endorse or am still open to and researching. Feel free to share your experiences, questions and solutions you may have privately (click my profile for my email address) or as a comment for others to see.

You have some time! Please do not feel that you have to give your sweet little newborn with his/her delicate tummy lots of vitamins and supplements right away! My Jett couldn't tolerate anything other than breast milk for the first four months and he's turning out very well. Some babies can take a vitamin from day one and some babies can't tolerate anything until six months old. All is not lost! It's most important that you attend to his/her basic baby needs (see Feeding & Early Care) plus extra stimulation (see Early Therapy). Your love and attention is what he needs most during these precious early months.
Jett, 9 months old

Keep up-to-date by subscribing in a reader to this blog or sign up to get each new post automatically sent to you by entering your email address in the "Follow by Email" box on the right of your screen. I'd love to know that you are actively following by adding yourself as a "follower." It's a small way to let me know you are listening. You can subscribe and "like" me on Facebook as well. I also have a group on Face book called Down Syndrome Baby Steps.

Also read New? Start Here to learn more about my philosophy and for updates on Jett's wonderful progress. If your child is a baby, rather than a newborn, please see the Babies Page.

Here's a pod cast about my early experiences with Jett: Andi Durkin Podcast


Preparing for Baby's Arrival

I would read Dr. Oz's You: Having A Baby. This book is not about DS, but it explains everything you need to know to have a healthy pregnancy and baby, including nutrition, emotional and environmental impact. It also is a great introduction to epigenetics, which you need to understand when supporting your child with DS. Another exceptional book that goes into depth about each of the topics above is Brighton Baby. It teaches you how to have a healthy baby in a toxic world. Even though you are already pregnant, it will show you exactly how to recreate your lifestyle so that it's the healthiest environment for when he arrives.

Certainly, you need to Find A Quality Physician and to get Organized with a Medical Notebook.

Also please take a look at the Parent's Resources for Guidance on Down Syndrome which include books, websites, blogs, DVDs and forums that I recommend.

Meanwhile, learn how to prepare a Toxin Free Environment for Your Baby to give him the best possible start.


Mom's Nutritional Support

Prenatal Supplementation for Moms with a Baby with DS

Pregnant & Nursing Moms Need Extra Choline

Healthy Meal Planning Blogs

Six Foods that are Surprisingly High in Toxins

High Fructose Corn Syrup Is a Major Cause of Dementia

Fermented Cod Liver Oil

Coconut Oil Info and Recipes

More Reasons to Avoid Processed Meats


Feeding & Early Care
Moms, caring for your sweet one will be your number one priority. These posts will help address some common questions and concerns.

Breastfeeding

How to Bottle Feed & Nontoxic Bottles

Baby Food & Formula Contain Arsenic, Toxic Metals

Healthy Alternative to Conventional Infant Formula

From the Einstein-syndrome website: Feeding an Infant with Trisomy 21

Keeping Nasal Passages Clear & Mouths Closed

Immunizations

This is an important issue for our babies with DS. You need to be aware of how immunizations can directly and permanently effect your baby. Please take the time to see this easy to understand video on Vaccines and Down Syndrome.


Early Therapy

Therapy starts from day one. It's an easy fun way to bond with your baby while providing much needed stimulation. The work you do now will prevent many problems from ever arising in the future. Think of therapy as "guided play."

Low Muscle Tone: What to Do

Massage Your Baby

Mobiles for Stimulation

Oral Motor Therapy from the Bits of Real Life Blog

Deep Pressure Tactile Therapy

Tummy Time

Teaching Your Baby to Crawl

Crawling: More Important than Sitting or Standing!

Toys that Support Crawling

Getting Your Baby to Communicate

Books to Read to Your Baby

Get Your Own Neurodevelopmentalist

The First 2,000 Days are Critical 
Heart surgery didn't stop Jett!
Medical Aspects of DS
 
You don't have to know all of possible negative effects of T21. You don't know what sort of health issues your baby may have, if any. I would recommend at least reading the thyroid, heart and medication entries because these are both common issues from the beginning and the treatments are very successful. But, if you want or need to know now, please feel free to read the medical entries. Dads and support team, have at it, but for pregnant moms, you need to be as relaxed and stress-free as possible.
for inquiring minds...Reflux: Treating the Problem Not the Symptoms

Reflux in Down syndrome

Signs of Nutritional Deficiency

Alzheimer's Disease & DS: Connection and Treatment

Celiac Disease & Down Syndrome

Anemia Causes & Cures

Cystic Fibrosis of Pancreas and Down Syndrome

Pulmonary Hypertension: Causes, Symptoms, Diagnosis

Hashimoto's Encephalopathy Mimics Alzheimer's Disease


Treatment for Brain Health

We all want to protect our little one's brain as much as possible. These posts explain the latest treatment plans/biomedical intervention (usually don't start until 3-6 months of age depending on your baby's digestion). I have many posts exploring brain support, but as a new parent, it's best to stick with researching the more popular treatments that offer a lot of guidance. Our children may all share an extra chromosome, but since every child is different; it's important to follow your child's cues & clues.

Which Multivitamin?

Cure for Down Syndrome?

Jett's Supplement List

List of Supplements Related to T21

This post will lead you to a whole mind set in caring for your child:
15 Things A New Parent Should Know
Support Forums

Here's a forum for parents of babies with T21 who believe in their Unlimited Potential. I also have a group on Face book called Down Syndrome Baby Steps.


What's it like to have a child with Down syndrome?

Here's a podcast about my early experiences with Jett: Podcast 12-12-12 With Project Member Andi Durkin-Down syndrome

Of course, it's different for everyone, but here's a thoughtful post on Deanna Smith's blog called Down Syndrome: a Promise of Happiness or a Curse?
 

Success Stories

Wondering how well treated kids are doing? Take a look for yourself:

Spiritual Guidance

Why me, God? on einstein-syndrome.com

From the Christian perspective, The Purpose Driven Life by Rick Warren has a chapter called, "You are Not a Mistake" that is available for free.

Here is a list of interesting articles and inspirational essays and poems compiled by Ria and Bill on their blog:

Creed for Babies with Down Syndrome by Anonymous

Friendly Observations for People with Down Syndrome by Karen Gaffney

The Impact of Childhood Disability: The Parent's Struggle by Ken Moses, PhD

The Special Mother by Erma Bombeck

Thoughts of a Mom by Maureen K. Higgins

Welcome To Holland by Emily Perl Kingsley

Welcome to the Magic Kingdom by Jill Kocian of Rivers of Joy

What Parents Wish They'd Known - Reflections on Parenting a Child with Down Syndrome (downloadable pdf file)


For Babies, see The Babies Page.
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