Wednesday, March 30, 2011


Breastfeeding was our first hurdle. I recommend reading lots of books about it first. 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 to understand why you must keep trying and not give up on your baby.

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!!) Do be careful though, there are some lactation consultants who do give bad advice.

It took Jett a while to get the hang of it because he just didn't have much of an appetite and it took some time for him to latch on with consistent gusto (see below for what worked for us). (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. In fact, he soon completely refused to use the bottle and only wanted the breast. He continued to breastfeed until 34 months old. (I totally understand if you don't want to go for this long, but as a stay-at-home month and with Jett's T21, I felt I needed to oblige for as long as I could.)

Here's another mom's experience with breastfeeding a baby with DS: No One Told Me I Couldn't

Breastfeeding Principles

According to Sara Rosenfeld-Johnson, breastfeeding mothers should follow these principles: 
  • Hold the baby in a position where his mouth is lower than his ears. 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.
  • 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. Also, your child may instinctively take care of this for you.

Originally published in ADVANCE Magazine August 4, 1997; from Sara Rosenfeld-Johnson. 

What worked for Jett

As I mentioned, Jett didn't have much of an appetite and it took some time for him to latch on with consistent gusto. He was a "happy to starve" baby. He never cried. I found out later that he indeed had a heart condition so no wonder he was having trouble.

To increase his appetite, I later added B12, but until then, I offered the breast every 2 hours, which he gladly tried to suckle. He would latch on and suck hard once or twice and then just lay there and let the milk come out then he'd swallow. We temporarily used a nipple shield to help him grab onto my nipple better. Please read how to use a nipple shield before you get one. Make sure you get one that is for a newborn--otherwise they can be huge and choke him.

Until he was able to suck well on his own, I would pump or hand express to bring forth the milk so when he did suck, he'd immediately got rewarded. I also used a dropper and needle-less syringe to give him milk anytime he gave me a good suck. We just did this over and over, every 2 hours, until he got it.

We tried a bottle as well, but was very picky about the nipple that I used. I bought every single kind I could find (yes, even Dr. Brown's) and he ended up liking the Enfamil slow flow nipple which was probably the cheapest one we bought! 

How to bottle feed to prevent common characteristics of DS:

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. 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?

Breastfeeding is excellent for many reasons. If possible, it would be great to nurse for at least two years to help him develop his jaw/facial structure more fully, which is so important with our low tone/small mouthed kids. Jett was breastfed until 34 months old. (I got pregnant and it was too sensitive/painful so I had to stop even though I was already planning to stop at three years.) During teething, I noticed that Jett breastfeed more -- probably because he needed extra nourishment.
Exclusive breastfeeding is recommended up to six months of age, with continued breastfeeding along with appropriate complementary foods up to two years of age or beyond.

If the umbilical 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 starting at six months or, since iron supplementation is not recommended for our kids with DS, you may need to add vitamin C to allow them to better use any iron they are getting through their diet. (Please read Achieving Iron Balance with Diet before you do any iron supplementation.)

Vitamin D3 is the only other nutrient that is not found in breastmilk. For some, sunlight on un-sunscreened skin may be sufficient in the summer in a sunny climate, but D3 drops will most likely be needed. Since I was giving Jett coconut oil, even with his very, very fair skin, he could be outside for an hour in the Florida sun w/no sunscreen without burning. Even with an hour a day of sun, his blood tests showed that he needed D3 supplementation as well. Note: the darker the skin, the more D3 supplementation/sunlight exposure you need. See How Much Vitamin D3? When supplementing with D3, you'll need to add Vitamin K2 also.

Problems breast feeding?

Check out the Feeding an Infant page on the Einstein Syndrome Website for tips.

Check out Mobi Motherhood's article on breastfeeding babies with DS. She has lots of different ways to look at breastfeeding, possible issues and solutions.

Also consider the possibility of a "tongue-tied" situation as described by Mom, Vanessa:
...Penny was in the hospital for her first 3 weeks because she had feeding problems that everyone put down to low muscle tone. Because of that, she has been unable to breast feed and struggles on a bottle. Although we've seen lots of lactation consultants and doctors they all said the same thing: low tone. Even though she has been assessed by physiotherapists who think her tone is totally fine.  
Then last week I read about tongue ties, this in particular: Posterior tongue tie information 
Penny had every symptom! But after seeing a few more doctors and Lactation Consultants (LCs) they still dismissed her feeding issues as "just DS".  
Today, after seeing this:, I went to an LC from the link on that page. She immediately saw that Penny had a posterior tongue tie and lip tie and both were cut.    
The cuts took about 1 minute at most, it really is just a quick snip. It cost $350 (half of which will be refunded by Medicare) for the two hour consultation with this LC, which included the snip by the doctor who practices in the same building. She was just given some baby Tylenol half an hour before but it was very quick. She could BF straight away, well she tried to anyway.

The rest of the two hours was spent discussing the TT, after care routines, teaching her how to suck.

Now, she's drinking from a bottle much faster already! And tomorrow I'll try to start breastfeeding, since I've been expressing EBM for every feed.

Update: As for the breastfeeding, she just loves it and doesn't want to drink from the bottle at all anymore. She's still getting the hang of her new mouth though and learning how to suck properly so her latch isn't great. The lactation consultant said it could take about 10-14 days for her to really catch on. So I'm going to BF, and keep expressing and topping her up with the bottle (although that is a challenge since she fights it off so hard) until she gets it right.

The LC said that TT can also block the Eustachian tubes. It will also effect speech, eating solids and obviously will result in slower growth since it's so hard to eat.

TTs are found in 10% of babies and are not spotted by doctors, LCs etc. enough because they don't know what they're looking for. Now that you know about them, I would ask that the next time you hear about someone suffering with painful BFing and a baby who "can't BF" you tell them about TTs. I'm sure there will be at least one lady in your mother's group whose baby has one. This is my mission now, to tell as many people as I can about this, it's such an easy solution to a complicated and overlooked problem.
Anyway, I just wanted to say that I've learned my lesson to never just be content to accept DS as a for a reason for anything. Certainly in this case, DS had nothing to do with her ability to feed, but it did provide a handy excuse for medical professionals.

If you can't breastfeed:

I cannot emphasize strongly enough how important it is to breastfeed your baby for muscle development and nutrition. But, pumping and bottling is a perfect so he can still get the nutrition he needs. Read about Bottle feeding.

If you cannot do it yourself, try to find a breast milk donor. (I know it sounds strange, but hey, we drink cow's milk and goat's milk, which is "donated" and human milk is so much better!) Look online now, just for backup so there will be less of a delay if needed. I've seen some companies who provide this service such as Milk Share, National Milk Bank, or Human Milk Banking of North America. Another good place to look for one is in your maternity ward before giving birth or straight after giving birth. In order to insure good supply of breast milk for your baby, it is practical to look for 2-4 breast milk donors. Look for healthy women who live not too far away from you. Even in the case of formula feeding, supplementing your baby’s diet with some breast milk (even occasional) will do wonders for your baby’s development and overall health. Commercial formula doesn't get close to the quality of breast milk.

If you have no alternative but to feed your baby formula (even supplemented occasionally with breast milk), add good quality probiotics into every bottle feed right from the start. Instead of the store bought infant formula that contains 50% corn syrup solids and a lot of other unseemly items, consider these Healthy Alternatives to Conventional Infant Formula.

Are you a Superstar Breastfeeder?

Consider donating your extra milk for those who need it! Visit Milkin Mommas: Become a Donor Milk Share, National Milk Bank, or Human Milk Banking of North America for details.

Related posts:

Pregnant & Nursing Moms Need Choline to Help Baby
Anemia Causes & Cures
How Much Vitamin D3?
Baby Food & Formula Contain Arsenic, Toxic Metals
Healthy Alternative to Conventional Infant Formula
Which Multivitamin?
First Foods: How & What & When to Introduce
First Foods: GAPS Introducing Solids
First Foods: Yogurt & Bone Broth
First Foods: Root/Leaf Vegetables
How to Bottle Feed & Nontoxic Bottles
Early Steps for Better Speech
Nontoxic Feeding Sets
Nontoxic Teethers
Toxin Free Babies
Heal the Gut, Heal the Child
Fermented Cod Liver Oil

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