Feeding an infant

Breastfeeding, Formulas, and Tube Feeding in Down Syndrome

This article is compiled from posts to the Einstein-syndrome email list. Sections include:

Formula Alternatives Not Gaining ~ No Heart Defect
Not Gaining ~ Heart Defect Baby Isn’t Interested in Breastfeeding
Weaning from a Tube Oral-Motor Techniques to Avoid Tongue Thrust

Formula Alternatives for Down Syndrome Baby

A new Grandma asks:
My daughter is having difficulty nursing her new baby. She is thinking of switching to formula. Is there anything that she should know?

Miriam responds:
There are some serious things to consider no matter what you feed the baby.

First, every baby with Down Syndrome has serious nutritional needs beyond what is provided in either breast milk or formula. This is the result of overexpression of genes that are triplicated on that 21st chromosome. For example, the baby will be under heavy oxidative stress and will need much more antioxidants than are provided in either milk or formula. For information on the special nutritional needs of a trisomy 21 baby, look at Ginger’s Cell Biology article. To meet many of these needs, many of us give our children NuTriVene-D which is a supplement of vitamins, amino acids, and minerals.

Second, breast milk contains a nutrient called DHA which is a fatty acid. A baby’s brain which is under construction, in the end will be largely fat, and the most predominant fat in the brain is DHA. Be sure your baby formula contains DHA. It is available in our diet from ocean fish, and fish oils. God provided for babies by including DHA in breast milk. To give our daughter every nutritional edge that we can, we provide her with DHA supplements which we purchase from International Nutrition.

If you provide a dairy (cow’s milk) based formula, be aware that many children with Down Syndrome have dairy allergies. The child may have too much mucous and be congested or stuffed up a lot. The child may have frequent colds. If this happens, the formula may be the culprit. Also many children with Down Syndrome have difficulty with constipation. If this happens, definitely eliminate all dairy products, including dairy-based formula. Cow’s milk can be very constipating even in normal people.

If you provide a soy based formula, be aware that there is a component of soy that depresses thyroid gland function. A deficiency of thyroid hormone in children may cause these symptoms: short height, short pudgy hands and feet, thickened protruding tongue, thin hair, tired, slow, mentally retarded. Doesn’t that sound eerily like Down Syndrome? Don’t let a thyroid dysfunction complicate what you are already dealing with in the Trisomy 21. If you must give soy formula, try not to give it exclusively, but rotate with some other formula. Search this site for “thyroid” to find other articles and posts dealing with thyroid. It is a big issue in Down syndrome. Also, read the thyroid web sites (Mary Shoman has a good one) and be aware of other things that also depress thyroid function (like fluoride) and avoid them.
Back to the breast milk. If the mother is just having difficulty breastfeeding, there is help for her. For example, La Leche League has a nifty gadget that supplements formula or expressed breast milk while the baby is still nursing at the breast. It is a bottle thingy that hangs around mom’s neck, and there are tubes that lead to mom’s breasts. The baby takes the tube and mom’s breast into her mouth and while she is getting supplemented, she is also getting whatever milk mom has and mom is having her own milk supply stimulated. Eventually mom has enough milk, and baby has learned how to do the nursing well, and the nursing supplementer is no longer needed. La Leche League really has some good helps for moms who want to breastfeed but are having difficulty.

Sherry provides this insight:
I finally unearthed an old copy of homemade formula recipes I had. You will all get a laugh out of this I’m sure….I can just see trying to do all this with a newborn baby, but I gotta say if I had it to do over again I probably would have in order to prevent allergies. There are eight different versions all incorporating very expensive flours but I don’t see why they couldn’t be tinkered with in order to provide a rotation with soy, rice flour or whatever.

Anyway here’s one example: 1/3 lb. cassava instant precooked flour (that’s in the cassava aisle at your grocery store J ) + 4 ½ cups water +1 2/3 tablespoons oil + 2oz. cooked lean meat + 1/16 teaspoon salt. Cook meat thoroughly till well done and tender. Mince. Boil the water, covered, stir in flour until smooth. Dump the whole shebang into a blender. Blend until smooth puree is formed or until your hair is standing on end, add water if desired (should have consistency of thin pudding). Pour into bottles. Cap and chill immediately. Refrigerate until just before use. Heat in any desired manner. Mix well. Yum-yum.

Now of course you would want to rotate the types of oil you use and the meats which I’m assuming should be like organic buffalo breast or something J and make sure not to crossover any food families and there you have it. I figure I could have done this right after the 4 a.m. feeding; I just would have had to take the blender outside so as not to wake Jamie up. For someone who couldn’t even put her shirt on right side out and even went out shopping with shoes from two different pairs when Jamie was an infant I can just picture me adding this to the repertoire.

The problem I see now is that if you have a baby who is allergic to say, corn-which is a biggy, all of the pre-made formulas are full of it. I was worried about milk vs. soy, but corn is Jamie’s biggest allergen and it is the source of dextrose. For the new mom who asked, if you have no success with rotating soy, meat based, and milk I would get thee quickly to a dietitian at a children’s hospital and have her prescribe an expensive formula so that insurance will pay for it. She will also be aware of what’s available. Alimentum is an expensive last resort for some families. That’s my input for the month.

Sleepy Baby Not Gaining ~ No Heart Defect

Miriam writes:
When Mary was born she was gaining verrry slowly, and the pediatrician was talking about “failure to thrive.” She didn’t have a heart defect that sapped her energy, she just didn’t eat enough. This child was willing to sleep her life away, and started sleeping through the night immediately-would have slept through the day, too, if I had let her! Our solution was for me to wake up around the clock, force her to wake, and feed her.

Sleepy Baby Not Gaining ~ Heart Defect

Carol writes:
Christine was doing great on the breast feeding-or so I thought. The home health aide was here today and when she weighed her she had lost 500 grams. Course she stripped her naked, the hospital didn’t, and the scale could be different as well. The nurse said not to panic and she will come back, we’ll to see if she gained then.

Of course the main problem is that she goes through times of being awake and nursing almost constant, or at least every two hours. Then comes a period where you just can’t wake her. I finally broke down and pumped a bit ago after her not eating well for about four hours, beefed the breast milk with extra Isomil, and fed it to her in a bottle. Even so it took a lot of time and effort for her to eat all of two ounces.

Is there anyway to help her so she doesn’t get so tired? To even her out so to speak, so that she has at least enough energy to eat on a regular basis? Do you think that I could make the hole in her nipple a little bit larger so she wouldn’t have to work so hard to get it? She consistently has trouble nursing in the afternoon and so that would be a good time to give her a more calorie-laden bottle.

I don’t know what I am doing here.J I only know that I don’t want to have to do the NG (naso-gastric) tube if I can avoid it. Any help you all can give would be much appreciated!

Joni sympathizes:
Hi, Carol, and congratulations on the arrival of Christine! My son Gabriel, who has Down Syndrome, is also my seventh child. He’s 19 months old now.

I’m sorry to hear Christine’s not doing as well with breastfeeding as you’d thought. That sounds soooooo like Gabriel at first. I remember being so happy that he was latching on well, and seemed to really like nursing, and then we started weighing him, and he was losing weight. Like Christine, he was incredibly, incredibly sleepy. I’ve never seen a baby sleep like he could!

I’ll tell you how things went with Gabriel, and maybe you’ll find something that sounds workable for you, too. Because he wasn’t gaining weight while still in the hospital after his surgery soon after birth to correct a duodenal atresia, and because he handled a bottle even worse than the breast, and because I wanted to avoid bottles if at all possible, he had an NG-tube put down. I was very, very upset, because it seemed sooooo artificial, and I couldn’t see how a baby could ever learn to regulate their appetite and feedings if they just had milk poured into their stomach! Plus, an NG-tube, in my eyes, screamed, I’m Different! Something Is Wrong With Me! I eventually got over feeling that way, and stopped noticing people’s reactions when they saw it.

In the end, though, that tube helped Gabriel to breastfeed, and I’m not sure he’d be still nursing now if I’d had only bottles to fall back on when he couldn’t nurse efficiently enough to get milk from the breast. He had the NG tube for four months, when something suddenly “clicked” and he just took off nursing. I was very, very grateful, very, very surprised, and very, very, very thankful. I’m still thankful on an almost-daily basis that he can nurse. His pediatrician was very supportive during those long 4+ months, and kept telling me to hang in there, that it wasn’t at all unusual for babies with Down Syndrome to take a while to learn how to nurse. He reassured me that he thought there were no problems with using an NG-tube for a few months.

I tried to always nurse Gabriel while I gave him the milk through the tube, so that he would associate breastfeeding with a full stomach, and I used every opportunity I could find to nurse him, even though I knew he really wasn’t getting any milk out. I nursed him to sleep, I nursed him when he was waking up, I nursed him while he was sleeping, if he’d go for it.

As he got a little older (about five to six weeks), I had a consultation with a lactation consultant who suggested we try a Haberman Feeder every other feeding, to help train Gabriel’s suck. The Haberman works on just jaw compression, not suction, so it can be a little easier for some babies to use. While I’m not positive the Haberman helped Gabriel in the way that we’d hoped, I think it was another useful tool to feed him, and I think it’s mechanics may help a breastfeeding baby to not start developing sucking patterns that interfere with breastfeeding, like regular bottles can.

I also, after the first month or so, used a Supplemental Nursing System (SNS, made by Medela), which is a bottle worn around your neck and filled with breastmilk or formula. Thin tubes run from the bottle to lay alongside your nipples, and as the baby nurses, s/he gets not only breastmilk from the breast, but also the supplemental milk from the SNS. I used the SNS for every other feeding for about three months. It works very well in many situations, but Gabriel had such an odd suck that the SNS wasn’t as much the “magic ticket” I was looking for as I’d hoped. Still, this might be something that would work well for Christine. One thing to keep in mind is that when you first start using the SNS, it feels really, really awkward! But, you get it figured out and it becomes much easier. If the SNS does work well, you can use it instead of bottles.

I don’t like to give advice, because I figure I don’t know enough about another person’s situation to be telling them what to do, but I will stress in all this that the best thing I did while going through this trial was (other than pray!) to get in touch with an International Board Certified Lactation Consultant, and to get help from a Speech/Language Pathologist (SLP) who had extra training in feeding difficulties. Between these two women, I was able to come up with a plan of action that worked for me, in my situation. The SLP gave us good ideas for exercises to wake up Gabriel’s mouth, and some ways to help him learn to suckle better, and the lactation consultant not only had lots of different devices to experiment with (good breast pumps, the SNS, the Haberman Feeder, feeding syringes, nipple shields, electronic gram scales, etc), but also gave me so much encouragement. I don’t think I could’ve done it on my own.

I should mention that, from what I’ve read and from listening to other mom’s stories, Gabriel’s breastfeeding difficulties were probably a bit more extreme than many other babies with Down Syndrome. Hopefully, Christine will get the hang of nursing more quickly, and with less paraphernalia than Gabriel.

If you want to look into locating a lactation consultant in your area, I believe you can call 1-800-TELL-YOU and talk to a Medela representative. They should be able to refer you.

You might also find some encouragement from a local LLL Leader (1-800-LA-LECHE), as well as LLL’s pamphlet, Nursing Your Baby With Down Syndrome.

Best wishes to you, and may Christine soon surprise you with a good weight gain!

Christine chimes in:
Contacting La Leche league would be a great idea. In my state you can also get a nutritionist through Early Intervention to come for home visits once or twice a week to help you with feeding problems and to do weight checks. Ours brought her own scale and weighed Nicholas weekly which was great. If you ask EI to get a supplemental nurser system, they should be able to get you one if they don’t already have one on hand, quickly and for free.

The Haberman is a great last resort, but I would go with the supplemental nurser system which is the bag and the tube that gives her nourishment while she is at your breast. We use the Haberman and it is great for us (Nicholas has a cleft lip and palate as well as Down Syndrome) because he could not suck at all. It is great for weak sucks. Nicholas has no suck at all, so he chews it with his gums and his tongue and upper gum and is able to get as much milk out as quickly as he wants. The nipple is also squeezable, so when he was very tired, we could gently squeeze to his rhythm and get the milk into his mouth. Maybe you could ask EI for one of each to try.

There are also Mead Johnson nursers, which are just squeezie bottles with really long nipples. You can use any nipple at all on them, and it was recommended that we try a cross cut nipple, as this allowed the best flow. You can enlarge the holes or cuts in a nipple as well, that was suggested to us as well. You could try the NUK, but you would not want to get her used to that, because it isn’t good for the eating or speech muscles.

Mixing formula into the breastmilk was a big help for us. Don’t mix to a total of more than 24 calories per ounce (it would be too much protein with not enough water), though. That would be one teaspoon extra per two ounces of formula or breastmilk for Enfamil. For other brands of formula, the extra measurement would be different because all scoops are not the same size. We also added corn syrup to boost calories to 29 cal/oz (1 teaspoon per 2oz) and to help with constipation. I have heard of adding prune juice or maple syrup as well, although you’d have to look at the calories, cause I’m not sure how much you’d have to add.

There’s no reason why you can’t continue to work at breastfeeding. Don’t let anyone tell you that you can’t do it, if that’s what you really want to do. I don’t know if it is physically possible for Nicholas to breastfeed, but I think I would have stuck it out longer trying and pumped for longer if I had had more support with it. There’s absolutely nothing wrong with a bottle either, and you have to do what’s best for Christine, yourself, and your family.

Good luck and I hope this helps a little.

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A new dad writes:
Our gal Abi, was born on Sept.17, 2000, weighing in at 6lbs 13 oz. She lost weight over the next two weeks to about 5 lbs. 13 oz. She made slow gains to about 6 lbs 4 oz. over the next eight weeks, but has gained no weight since the onset of congestive heart failure symptomology. We have been using a supplemental nursing system to augment her breastfeeding, and a recent four day stint in the hospital for tube feeding hasn’t amounted to any net weight gain. Abi has been on Nutrivene since week two. She will only take now if we mix it with pureed apricots. She will be coming home from the hospital today with a tube feeding set-up. I’d like some input from folks who may have some practical tips on how to see our girl put on some pounds.

Priscilla responds:
Evan didn’t have the AV canal heart defect, but did have three holes-ASD, VSD and a PDA. Due to back surgery and then infections afterwards he was in congestive heart failure quite a while from about one month old to five months old when he had open heart surgery to close the holes. I was determined to breastfeed but he didn’t have the energy to suck more than a minute or two and went to sleep sweating and exhausted from the effort. So he was put on an NG (Naso-Gastric) feeding tube. Even bottle feeding proved to be too much effort for him.

Now, since 80-90 cc’s was the most amount of fluid Evan could take in a three hour period without going into congestive heart failure, we had to supplement the pumped breastmilk with powdered Isomil formula to add 30 calories per ounce. This has to be measured out carefully as they cannot tolerate it if it is too strong. With these added calories Evan was able to gain weight a little-at least enough to have heart surgery at five months when he weighed around 10 lbs. He also had gone below birth weight of 7 pounds 11 ounces at around six weeks old. If I had it to do over, I would not use Isomil as Evan became allergic to it and soy seems to be implicated in thyroid issues which kids with Down Syndrome tend to have problems with. I’m not sure what I would use but Evan did end up on Alimentum (after one year when I tired of pumping breast milk) which was expensive but it was the only thing he didn’t develop an allergy to and I tried canned goat’s milk, fresh goat’s milk, rice milk, all the formulas-Similac, Enfamil, everything on the grocery shelves.

I didn’t like giving him formula but there was no choice as breastmilk simply didn’t have enough calories in 90 cc’s for him to gain weight. We set up a schedule every three hours around the clock. My 18-year-old tube fed at midnight, the 15-year-old at 3 a.m. and the then 13-year-old at 6 a.m. Of course Evan was laying beside me so I sort of woke up but didn’t have to totally. That way if there was a problem, I knew it. It worked great and he gained. Don’t know what I would have done without the help from my older children and my husband.

Continue to feed as much as possible by mouth. They will forget how to suck, how to swallow and everything connected with oral feeding and it will be very hard to get rid of the tube the longer they are on it. Just five months on a tube and it took me three weeks (literally eighteen hours a day) of doing nothing else but feeding him to get him off that tube. And even then it still took lots of time for months-in fact the first food he ever went after and enjoyed was chocolate cake on his first birthday-a big break through! The cardiologists laughed and said, “Give him chocolate. Chocolate everything if that’s what it takes!”

The Nutrivene is the best thing you can do for her at this point in my opinion. Whatever it takes, get it in her. We didn’t start it till about the same time as heart surgery at five months but wish I had known how to get it sooner. Lotsa luck and we’ll be praying for you all and your little one.

Sherry remembers:
While we were awaiting Jamie’s first heart surgery (at six months of age) my entire life revolved around feeding her.

Kathy R. agrees:
Us, too. I kept a record, because Danny was only able to take about ¾ of an ounce per feeding (got too tired, plus he vomited a lot). We fed him, on the average, 22 times in a 24 hour period. We boosted the calories in his formula. It paid off-by the time of his surgery at 8 ½ months, he weighed 17 lbs. He was much easier to feed after his surgery-would take 4-5 oz per feeding and keep it down. So there is light at the end of the tunnel.

Baby Isn’t Interested in Breastfeeding

Norma writes:
I am feeding my son breast milk in a bottle. I have been unable to get him to breast feed. I have tried everything, read the Circle of Friends book, etc. He is just not interested. He has an excellent suck on the bottle. I put the breast to him and he just spits it out like it tastes bad. I am tired of pumping and feeding. (sigh)

Carol tells what worked for her child:
I am new at this myself, but I can tell you what has worked for us here. I let her get hungry. Have you tried that? I mean really hungry so that he is looking for food? Christine started out very slowly nursing and I was ready to quit a number of times, but the longer I stuck with it, and the fewer bottles she had, the better she became at it. Now she doesn’t know what to do with a bottle anymore. J

At first, we couldn’t get her to latch on at all, now I can’t get her to let go! For some strange reason I would have to switch her from one side to the other. Sometimes it took her a full 45 minutes to latch on. Now she gets right on most times and I am able to nurse her while sitting as well. She is latching on better too, before she wasn’t just quite right and it hurt, but lately she has really improved that as well. The other thing that helped with her was to nurse only while laying on the bed. I also put a pillow behind her back to support her firmly on her side.

I am so glad that everyone really supported me breastfeeding her. Without that support I would have stopped too. All that pumping with a baby laying there is discouraging, but try to let the little guy get really hungry and see if he doesn’t get the hang of it. If he’s 9 1/2 pounds he will be able to go a little longer between feedings too. (They told me Christine could miss two feedings, but then I had to feed her. And I only had to do this a few times. It goes with out saying not to starve your little guy.)

Christine also lost weight for while, but now she is gaining!! YIPPPEEE! Two weeks ago she weighed in at 7lbs 10 oz and today she was 8 lbs 5oz! It has taken a lot of time and work (and panic on my part) to get here, but now she is really doing well just on the breast.

The thought came to me while I was nursing…have you tried getting him started using a nipple shield? It’s more like the nipple on a bottle and it just might be what he needs to get started. I don’t see why you couldn’t use that all the time if needed, though I would ask a lactation consultant. Is there one at your hospital that deals with Down Syndrome kids on a regular basis?

Joni encourages:
Norma, I just want to encourage you to hang in there with the breastfeeding. You are doing a fantastic job by giving him breastmilk in a bottle, and it may well be just a matter of time, and maybe the right kind of assistance, before he takes the breast well. I remember how discouraging these days are! It helped me to take just one feeding at a time, to keep a journal so that I could see the slow progress, and to pray a lot. J I also found a good lactation consultant invaluable, as well as my local La Leche League Leader, and a certain speech pathologist who has extra training in feeding issues. There are still lots of little tricks and devices you can try. In the meantime, again, good for you to be pumping! That milk is liquid gold.

It was a long, rough road, but I’m so glad I persevered. I joke that it took so long to get Gabriel nursing, that now I’m going to see that he never weans! So hang in there; you still have lots of time for this to work.

Joan Elder remarks:
It took me three months to get Olivia to nurse fully. She would do it once in awhile then cry when I tried again. Come to find out she had an undetected heart defect that the cardiologist missed. I finally insisted that she nurse from the breast when she was three months old and doing well with her weight. She was 9lbs 4oz at birth, a big girl. She took the breast after six hours of no bottle and did great after that. She nursed until she was 33 months old and is a very happy healthy girl now. She did have her heart repaired at seventeen months old.

Check out the heart and keep pumping breast milk. I know how exhausting it can be. Can you find some people to help you with other things so you can focus on just doing the nursing thing? I had people from church bring me meals three times a week for three months.

Weaning from a Feeding Tube

Natalie says:
My daughter Georgia is two weeks old. Basically, I visited the doctor today and asked him how long she was to keep tube feeding. He told me it is up to me.

Georgia is being tube fed six times a day after the bottle. One feed she has about 85 cc’s, but the others she is only taking 20-40cc’s. She is very hard to arouse, especially at night. Would it be okay to miss the night feed in the hope that she is more awake during the day?

I’d really appreciate any advice or histories with regard to your efforts with tube feeding. Have you tried to remove the tube this early on? The doctor hasn’t provided much encouragement.

Priscilla responds:
If the doctor said it’s up to you, then perhaps you need to devote full-time for a few weeks to feeding your baby. Evan was on an NG-tube for five months prior and after heart surgery. No choice in the matter-he didn’t have enough strength to eat. Add congestive heart failure if we gave a drop too much. To keep him from going to a stomach tube I “gave away” three weeks of my life to feeding Evan-that is literally all I did for three weeks. I got done with one feed (took three hours) to start another. Day and night. At the end of three weeks he had neither gained nor lost so they gave me a couple more weeks. If I hadn’t done it, I believe he would still be on a tube today. Everyone said the longer they are on, the harder to get off.

Is the baby taking anything by mouth? You need to start working on that.

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Catherine shares her wisdom:
Here are a few things we did to help Andrew become a self/oral feeder. He started out life in such a poor way. L The little fellow had so many strikes against him … including a tongue way to big for his little mouth. This combined with a poor suckling instinct and Hirschsprung’s disease really set him back. For the first five months he had an NG tube. When the doctors realized he would not eat, they performed a fundoplacation (reflux/esophagus surgery) and g-tube placement. At a very early age we used a kangaroo pump (for about a month) so I could rest (we used this only at night).

At fourteen months the GI doctor said, “If this little guy doesn’t start eating by age 18-24 months, there’s a good chance he will never eat by mouth.” These words horrified me, mostly because I was always so tired from tube-feeding every two hours ’round the clock. We tried the usual: OT therapies, oral stimulations, cleft palette bottle/nipple, tastes of salsa or bold flavors, tongue stroking, wet washcloth on the face before feeding. His surgeon suggested a partial glosectomy (partial tongue removal); he is near retirement and a chief of pediatric surgeon. He had performed this only about five to eight times during his career. We finally consented.

Before surgery the baby couldn’t properly close his mouth. Everything that went in ran right back out. After surgery, he drank from a cup in recovery! Never did drink from a bottle. Here is the strategy we used.

Everyone we knew would pray for Andrew each day to learn to eat. As a family we would pray out loud in front of him at mealtime and bedtime.

Being a stay-at-home-mom helped tremendously.

I refused to give up!

He had no other medical needs that warranted tube feeds … just lack of skills.

We had to train him to associate a hungry tummy with food going in his mouth to satisfy hunger.

At about 20 months I rarely let him see me tube feed him. I had to be sneaky and only tube feed him when he was sleeping. This meant dressing him in clothes that had easy access to tummy, so as not to wake him up, a goal not always obtained with a hectic family schedule. I would feed him formula this way before I went to bed, then set my alarm to get up at night.

I tried never to tube feed less than three to four hours before he would wake up, this way he would be hungry in the morning.

Andrew was offered breakfast/lunch/dinner with the whole family. I was happy if he would take one bite! If this proved too stressful, he was removed from the table (after attempting to eat) so as not to ruin the family meal.

PRAISE, PRAISE, PRAISE!! every small improvement.

Don’t give up. Don’t give up. Don’t give up!!!

Be persistent!

Think positive!

I used to say out loud each day, “YOU WILL LEARN TO EAT” …

Biggest help: Prayer/Consistency/Timing/Praise

For introducing textures we used a baby cereal by Gerber with fruit bits and small crunchy cereal bits. It’s not readily available in CA (except at the Gerber web site).

We offer him everything we eat now.

One other big help getting Andrew to eat was my TV. When it was just the two of us home (not a family meal) I would spread a tarp on the living room carpet, pull out the high chair and put on a favorite cartoon. This helped to distract him at an early age so I could just “slip” the baby food into the side of his mouth without much fussing. I used a little eye dropper, then progressed to a petite rubbery feeding spoon. Now at four and a half (when he eats alone) I still turn on the TV (now a small portable one near our kitchen table). This method has worked great! I think having him exposed to a variety of “quality” videos has also helped with his speech. He certainly eats a lot more!

Oral-Motor Techniques to Avoid Tongue Thrust

In her article, Oral Motor Myths of Down Syndrome, SLP Sara Rosenfeld Johnson describes how feeding posture affects later tongue thrust in babies with Down Syndrome. She stresses that the baby should be held with the mouth lower than the ears:

In infancy, nutrition is of primary concern. Our job is to balance nutrition, successful feeding and therapy. Goal one is to change the position in which the child 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 the child draws the milk up the nipple predominately with tongue retraction. This position and retractive action prevents milk from flowing freely into the child’s mouth. The child no longer needs strong tongue protrusion to enable swallowing. It is also important not to make the hole in the nipple larger.

But how can a weak baby draw milk up through a nipple when the bottle is lower than the baby’s mouth? By cheating:

Can children 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 breastmilk or any variety of formula, and the air can be forced out causing a vacuum. This type of bottle can then be fed to the child in an upright position. If the child has trouble drawing the milk up because of weak suckle, you can facilitate the draw by pushing gently on the liner. [emphasis added]

When I have used this technique with even the most severely impaired children, it has been successful. After a week or so you will be able to push less as the muscles will begin to get stronger. Facilitation is generally eliminated within 3-6 weeks.

Priscilla adds:
Just wanted to add to this that Sara Rosenfeld-Johnson does pretty much excuse us for doing this if there are heart problems and feeding problems that are life-threatening. I think the take-home message is to do what you have to do to keep them alive (including cross-cut nipples) but then try to get them off and eating and sucking “normally” as soon as is possible. We are one of those who had to use cross-cut –without it Evan would have been stuck on tube feeding which is even worse oral motor wise than cross-cut nipples, and harder to get off of. I just wish I had known to gradually get rid of the cross-cut and work on building up those mouth muscles. If I’d known about her program I’m sure we could have avoided years of nonverbalness and years of delays in everything due to the no speech.

New parents of kids with DS or parents of young ones, please look into doing Sara Rosenfeld-Johnson’s exercises for speech. Speech is about the #1 problem in Down Syndrome and I believe most of the problem is probably the same as Evan’s –muscle strength in the lips, tongue, jaws, abdomen and mouth. You cannot begin to talk clearly with floppy low tone no strength muscles there.

19 Responses to Feeding an infant

  1. Danielle says:

    It take me over 2 hours for my 2 month old daughter to drink 4 ounces, which I think is due to her not sucking properly. I mean she can suck, but so much air is getting in her mouth and she has so much gas. Is there a special bottle that is good for children with DS? I feel as if all day I am feeding her.
    Thanks!

  2. lynne says:

    ANyone have any ideas as the best bottle (nipples ) for bottle feeding for a baby with downs She is 8 weeks old and just had a vsd and asd repaired last week. Still on NG tube feeding but want to change that as we hove been doing this since she was born

    Thanks

  3. Mary says:

    Hi.

    My son faced both these issues: taking forever to eat as a very young baby; and later, using an NG tube before and after his heart surgery.

    Two tools proved invaluable: 1. the Haberman feeder, which is a bottle designed with a special nipple for children that, for whatever reason, don’t have a strong suck. The Haberman makes feeding much easier and less frustrating for all involved, or at least it did in our case; and 2. a finger feeder. This was basically a very narrow tube, taped to my finger with about 1/4″ extending beyond my finger. At the other end, the tube was attached to a vessel that held milk. This vessel had to be higher than the finger tip with the tube taped to it. I put my finger in my baby’s mouth and he sucked. I praised him the whole time he sucked. This was done many times per day and night in order to get him to take by mouth the amount he needed to get off the NG tube.
    I can’t remember who makes these products, but I’m sure a google search will turn up specific information.

  4. Charlene says:

    Hi,
    When our 6 month old son was first born the Speech Therapist at the hospital recommened using the orthodonic nipple which has a flat side to it. It works perfect for him due to the enlarged flat tongue he has associated with Downs Syndrome. He is doing great and deinking 4 to 5 ounces every 3 hours. Also there are facial exercises you can do that help with his facial muscles, your OT could show you.

  5. yousuf says:

    i have a kid with down syndrome he is 30day s old
    advice me if you have information about peptide (ABNF9 and ADNP), i will be very hapy if reply
    where i can find these peptide as a drug? and How i can use it to help my son?

    regards
    yousuf

  6. Grace Higgins says:

    I have a 10 month old son with DS and he has been breast feeding since birth. Had cardiac repair of TOF at 5 months. Currently has not gained weight since that time, and just found out his TSH is high, plus he has all the sypmtoms. He refuses to take a bottle, sippy or other forms of cups and my milk supply is diminishing. We just got his reflux esophagistis under control but we are still having trouble getting him to eat solids and or wean to a bottle or cup. Any suggestions???? we are desparate and I feel so helpless not being able to provide for him… Help?

  7. Darla Haskell says:

    Cardiac surgery can cause the thyroid to react due to stress. This could be the reason for no weight gain. Don’t panic…he hasn’t gained but you didn’t say that he lost weight so that is good. Keep breast feeding and keep trying babyfoods. My son started with sweet potatoes, then pears, then meat…and he loved the meat. I added a bit of butter to it to add calories and just a tiny bit of salt because his electrolytes were so out of wack from the stress. He ate babyfood meat until he was 3 yrs old…and when he would get sick that would be all I could get him to try. I met other parents that heart babies were crazy for the meats…mostly its the textures and just need time to get used to it. They often vomit which I believe is al the meds they take so i am always careful to never give meds on an empty stomach and at a time when they will be sitting up for a good while. Pump like a crazy women…he needs that good nutrition…freeze it…he will recover given time. Heart surgery is a major deal…often recovery takes years…my son has had four and the last one took us a good two years to come to almost normal…and his thyroid never went back to normal after the long recovery and having to be medicated. Thyroid medicine taken over two months means that your thyroid reprograms itself…thyroid conditions are not uncommon in children with DS even without heart defects.

  8. Ali Haefke says:

    Hi. I know others will reply soon who have children with DS who have had heart surgery. I just wanted to post that when we were going through a particularly difficult time with our son with DS (he was still breastfeeding at the time) and he went through a period of refusing to breastfeed and also refused bottles and cups one thing that got us through until we could get it straightened out was an eyedropper. I know it doesn’t sound like much… but it was better than no nourishment and somehow we were able to get some drops in here and there. I hope you have a good breast pump. If not, ask at the doctor’s office or hospital for help or on the Einstein list. There’s an herb called Fenugreek that may increase milk supply. Here’s a link with info. on that and other galactagogues (things that can increase milk supply). http://www.drjaygordon.com/development/bf/galact.asp Here’s a link that has info. on fortifying formula if breastfeeding isn’t possible – http://articles.mercola.com/sites/articles/archive/2000/10/22/infant-formula-part-one.aspx
    I am going to be praying for you and your son. For his health and eating and that he’d be able to have breastmilk and for God’s protection and mercy upon you Grace and upon your son. Blessings, Ali xo

  9. Paul Doney says:

    Our son did not have any cardiac issues but he was very difficult to feed from birth. We had to be very careful with volumes, speed, positioning and burping otherwise he would projectile vomit during the first days. After that we became experts at careful feeding. However, when he was 5 months old he stopped gaining weight and a barium meal revealed a duodenal stenosis (marked narrowing of the upper portion of the small intestine). This required immediate surgical correction. When the surgeon was in there he found 4 other things that required surgical correction so we were very happy that it was investigated.
    Has this possibility been ruled out?
    Paul Doney

  10. Liora says:

    Medela makes a Special Needs infant bottle. I bought one but never even used it, because our baby nursed pretty normally. A slightly low suck at first because she was getting oxygen and feeling kind of ill I guess, in the hospital. But perseverance and a day or two, and she came through just fine. She had only one bottle that whole time in the hospital (day 1 of life…stupid me consented) but then I started asserting myself. No more formula. I’ll nurse her. No I won’t pump it out so you see “how much”, I’m not that great a pumper. But I knew her suck was good enough to get colostrum, and stimulate milk coming in and it was, for us, working fine.

    In other cases even if the baby is not strong but the mother wants to nurse, it can really be beneficial to pump pump pump and feed baby by adjustable special needs bottle for a couple of weeks or until the baby gets strong enough to nurse normally. The bottle is adjustable and you just go from easy to hard, then to nipple. You’ll be glad you did!! Liora in Beijing

  11. Helen says:

    Hi I just had DS baby. It’s been a month now. He is still in the hosp. because of some problems. ASD, VSD, PDA at the same time. Right now, we are working on him for bottle feeding. I breast pumped for almost a month but i am having low supply already maybe bec. of stress.
    He sucks for 4 to 5 times and started coming back from the nose and he really wanted to eat. When he gets tired he will just fall asleep and ending up putting the rest into NG tube. I am concern how come that is happening. I am hoping he will be able to suck the whole milk from the bottle without any problem like that. Any advise ???thank you..

  12. Andi says:

    Hi Helen!
    My baby (now 9 months) had some similar problems. You can email me and I can give you my phone number. I know how stressed you must feel but I do have some advice for you. andi222@hotmail.com
    Andi

  13. Qadoshyah says:

    Hi Helen,

    My little brother was in the NICU for 2 wks after he was born. And it took my mom a lot of work and persistence for him to breastfeed. But, he eventually did breastfeed and breastfed for 2 years. Here’s her experience: http://www.gotdownsyndrome.net/nursing.html. Feel free to email me and I’d be glad to help more – qf@gotdownsyndrome.net

    Qadoshyah

  14. Jayme says:

    Hi Helen!
    Congratulations on the birth of your baby! I just wanted to encourage you to keep breastfeeding. My little guy with DS wasn’t able to tolerate even the most hypoallergenic formulas, so hang in there with the breastfeeding–it’s worth it in so many ways!
    Yes, stress can make your milk supply go down some. Have you heard of using the herbs fenugreek and blessed thistle to help your milk supply? You can find them at some different websites, I recommend http://www.herbalcom.com or http://www.vitacost.com or swansonvitamins.com Dr. Jack Newman recommends 3 of each, 3 times a day, so 9 total of each daily.
    I have used these herbs with my last two babies. It makes a difference. Also avoiding foods that decrease milk supply is good. Sage, peppermint (even peppermint candies), cabbage, and lentils.
    I found tons of good breastfeeding info at http://www.kellymom.com Go to the section on breastfeeding, and you will find all the info you could ever want!
    If you have any more questions, just ask. I am happy to help where I can. osborntandj@gmail.com

    Blessings,
    Jayme

  15. Donna says:

    Hello and congratulations on the birth of your dear son! My son is 3 now, and his name is John. I live in Australia. We found out he had DS at birth and he required bowel surgery for blockages and other bowel issues when he was 5 days old. We finally got him home after about 6 weeks.

    John had a very, very small ASD and it didn’t require surgery, so I can’t really advise on cardiac stuff but I will let you know about our feeding.
    Please be assured our kids with DS tire really easily, and it has a lot to do with their low tone. Of course, a baby with heart issues will tire easily as well, and your little man has the combination of both.

    We had to wait some time after his surgery before he could try and breast feed, and I almost drowned him! A nipple shield helped him immensely. Having said that, he tired so easily and it wasn’t very successful. After about 5 weeks we transferred back to our regional hospital with the hope of weaning John off the nasogastric tube and getting him on to full time breastfeeding.
    I felt a lot of pressure to get that happening in a week, but it was not going to happen in a hurry. He wasn’t ready and not getting enough milk to survive on. I made the decision to take him home with a nasogastric tube in so we could work on both (it didn’t worry me because I was once a RN). I had been pumping all that time and had a great supply to work with.

    After a couple of weeks at home John wasn’t putting on weight and I really think he was just using up all the energy he had trying to breast feed, even with topping up via NG tube. So I started using Pidgeon bottles with him and my EBM. What a difference that made. He could finish a bottle almost! He had his NG tube out about a week later after that. What a relief!

    I continued to express, and use bottles for about 5 months while I tried to get John breastfeeding. We succeeded and breastfed until he was 20 months.
    It was very hard at times though and I just about gave up a couple of times.
    I supplemented with formula as my supply dwindled at times too. If you want to try and stimulate your milk production just see if he will suckle (maybe even after you express) for a while. It really does wonders for the hormones.

    I can’t remember the name of them, but you can purchase long teats which make feeding a lot easier. I wasn’t sure what you meant by “and started coming back from the nose and he really wanted to eat.” Does milk come out his nose when he feeds?

    I really encourage you to try and stimulate your milk production because breast feeding is great for your son’s jaw development, and his immune system. Having said that, you main objective of course is just to get him to drink, and get some weight on. Expressing etc is a big commitment too, and really you need to find the balance that is going to keep you sane!

    As long as he can do it all physically, the drinking will take time but he will get there. Again, I don’t know how much his heart issues are affecting his energy levels, and that may be playing a very large part. Does the hospital have a lactation consultant that you can talk to? Some know what they are talking about and can give good advice.

    I wish you all the best and you will be in my prayers,

    Donna

  16. Ali Haefke says:

    Hello. :) I can’t address the issues of feeding that you’re having… but I’m thankful some other moms are. What I wanted to share was a suggestion that when you have time you go to the U.S. National Library of Medicine http://www.pubmed.com and check out the medical studies involving cardiac issues and CO Q10. We give our son who has DS CO Q10 daily as he has a mild heart issue. The studies will show you how important it is for heart function. I know it doesn’t fix every heart situation… but it’s excellent for so many cardiac issues.

    God bless you and your family. He will help you through all of this and I truly believe things will get easier. Ali XO

  17. Deanna says:

    Hi Helen,
    in addition to what others have said about breast feeding, I highly recommend a hospital-grade breast pump if you don’t already have one. You can usually get one from the hospital or rent one on a month-by-month basis from a lactation consultant. They are quite a bit better for increasing supply than the ones sold in stores. Oatmeal and meals high in carbs and protein also worked well for me. We really struggled with breast feeding at first, it took about 3 months before things got easier.

    all the best,
    Deanna

  18. Susanna says:

    Hi Helen!

    Not so long ago, I was right where you are! Our daughter had a complete AV canal, and major feeding issues from the start. I pumped from Day One, and am still pumping full time, at 5 1/2 months old.

    I started out feeding her with a syringe, then switched to bottles. I had wrong info, though, and if I knew then what I know now, I would have stuck with the syringe, and tried using a nipple shield and supplemental nursing system.

    She would take 1 1/2 hours to get 3 ounces by bottle.

    She was hospitalized at 3 weeks for IV Lasix and received an NG tube then. We just used the tube to give her what she didn’t drink before she wore out.

    She had her heart repaired at 5 weeks, as she did not respond to the Lasix and was failing fast.

    She went home from her surgery with the NG tube, and we used it to give her the remainder of her feeding. She gradually took more per feeding, and a month later, she was close enough that her ped. okayed us taking it out.

    Then another two months, and she was fast enough with the bottle (5 minutes per ounce) to try nursing. She was 4 1/2 months old. That was a battle and a half! And she went back to the long-drawn-out feedings! But worth it, because she has now been nursing for a month, and I am SO happy, knowing how good it is for her!

    I use a nipple shield and the supplemental nursing system, and she still takes a very long time to eat–usually an hour to get 5 ounces, sometimes even longer. I’m not getting much else done in life-hahaha! But I know I’ll look back and think this went by too fast, so I’m just trying to enjoy it while it lasts.

    Please check out our blog, and you can email me right from the blog if you like. I will be happy to encourage you all I can!

    Blessings to you,
    Susanna

  19. Carrie says:

    Our DS boy was in the intensive care for a week, so I started out pumping. When we finally could nurse he seemed to latch on and suck well. As this was my 11th child we were sent merrily home. He slept through the night early on as all my children had, and I thought nothing of it until we weighed him at five weeks- he had lost over a pound! We frantically sought help and a nurse from the NICU who had a daughter with DS called me and gave me this great tip:

    As your baby nurses place your forefinger between the breast and the cleft of his/her chin and apply gentle downward pressure- LO AND BEHOLD! his whole sucking action changed! This more efficient latch (plus the SNS for a few weeks) helped put the weight back on.

    That said, weight gain continues to yo-yo but is trending generally upward (he is 15 months now).

    Hope this helps someone!

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