Wednesday, February 20, 2013

Tips on Breastfeeding a Baby with T21

Tips on Breastfeeding a Baby with T21

by Andi Durkin

Breastfeeding was our first hurdle. I recommend reading lots of books about it before you start. My favorite is So that’s what they’re for: Breastfeeding Basics. I always wondered why a book would be 300 pages about the importance of breastfeeding. Now I understand that it’s necessary because breastfeeding is not always easy and you need as much motivation as possible.

Also, please get the numbers of a couple of highly recommended lactation specialists before you deliver, if possible. Have those numbers handy and don’t be afraid to call them. They LIVE for this stuff! They would love to help you! Call them sooner and not later. By the time I called, I was hysterical, felt like a failure and had to email instead of talk because I was crying so much. (Thank you, Kristin, for taking my 3 am call!!)

It took Jett a while to get the hang of breastfeeding because he just didn’t have much of an appetite and it took some time for him to latch on with consistent gusto. (They threatened to put him in the hospital for failure to thrive, but I begged the doctor to give me the weekend. During that weekend, it was nonstop breastfeeding and I was able to keep him out of the hospital.) But, once he started breastfeeding, he became a pro and is still at it 25 months later. (I COMPLETELY understand if you don’t want to go for this long, but as a stay-at-home mom and with Jett’s T21, I feel I need to oblige for as long as he needs it.)

According to Sara Rosenfeld-Johnson, of TalkTools, breastfeeding mothers should follow these principles:
Hold the baby in a position where his mouth is lower than his ears. Stimulate the mammary glands while the child is suckling to increase milk flow. This also enables the mother’s milk to come in stronger. As the child’s suckle strength increases, the need for gland stimulation will be eliminated. A simple change in the position relationship of the child’s mouth to the bottle/breast can improve long-term oral-motor skill levels. That one change prevents a series of abnormal compensatory patterns from developing.
Originally published in ADVANCE Magazine August 4, 1997; from Sara Rosenfeld-Johnson.
How to Breast feed to prevent common characteristics of Down Syndrome
Goal one is to change the position in which your baby is being fed. Mouths must always be lower than ears to prevent milk flow into Eustachian tubes. The bottle position is altered to introduce the nipple from below the mouth, vertically encouraging a slight chin tuck. In this position your baby draws the milk up the nipple predominately with tongue retraction. This position and retractive action prevents milk from flowing freely into your baby’s mouth. Your baby no longer needs strong tongue protrusion to enable swallowing. It is also important not to make the hole in the nipple larger.
Can babies with weak suckle draw the milk into their mouths in this position? Yes, if you don’t use standard glass bottles. Bottles with the disposable liners, in either 4-ounce or 8-ounce sizes, can be filled with either pumped breast milk or any variety of formula, and the air can be forced out causing a vacuum. This type of bottle can then be fed to your baby in an upright position. If your baby has trouble drawing the milk up because of weak suckle, you can facilitate the draw by pushing gently on the liner. This technique has been successful with even the most severely impaired babies. After a week or so you will be able to push less as the muscles will begin to get stronger.

Here’s an informative presentation about breastfeeding a baby with Down syndrome: http://breezemsprod2.tch.harvard.edu/p93272789/. You can skip the first 5 minutes of introduction and start at 5:50, if you’d like. 9:50 is where the info on DS starts.

How long should you breastfeed?
That’s totally up to you! According to the World Health Organization, exclusive breastfeeding is recommended up to 6 months of age, with continued breastfeeding along with appropriate complementary foods up to two years of age or beyond. Since breast-feeding is excellent for so many reasons, it would be great to nurse for at least 2 years to help fully develop their jaw/facial structure which is even more important in our low tone/small mouthed kids. Jett is still breastfeeding at 25 months old; I’m following his cues. (Although my husband would rather me follow his cues, or clues, or huge hints that it’s time to wean.)

What about Iron and Vitamin D3?
If “the cord” was cut after it stopped pulsing, your baby should have enough iron stored for 10 months. Otherwise, you may need to supplement with iron-rich foods starting at six months. (Please read about iron and DS before you do any iron supplementation. See Anemia Causes & Cures) Jett did show low iron so I supplemented starting at 15 months old with Floradix. His iron levels are fine now and is no longer supplemented with it.

Vitamin D3 is the only other necessary nutrient that is not found in breast milk. For Jett, a hour of Florida sunlight a day is sufficient. If you’re not so lucky, Vitamin D3 drops will also do the trick. Rule of thumb: the darker the skin, the more D3 supplementation/sunlight exposure you need. To learn more, see How Much Vitamin D3?

Problems breast feeding?
Check out the Feeding an Infant page on the Einstein Syndrome Website for more tips.

If you can’t breastfeed
Although it’s beneficial to breastfeed to help with muscle development and nutrition, sometimes you just can’t! Pump and bottle is a great alternative so that your baby will still get the benefits of excellent nutrition. Read about Bottle feeding.

If you have no choice but to feed your baby something other than breastmilk (maybe you can supplement occasionally with breast milk), check this blog post out: Healthy Alternative to Conventional Infant Formula.