There are several good articles I have added links for on the issue of oral aversion. But I’m going to write this from River’s perspective because all children usually develop this condition for slightly different reasons. I wish to explain it as best I know from River’s experience and what I’ve learned on this journey.
River’s long-term and difficult stay in the hospital after being born was hard on everyone. But as she grew from a 3 and a half pound baby to a six pound baby in her 62 days in the NICU/ICN we worked very hard on trying to provide a normal feeding experience to her. Her large VSD worked against her everyday in attempts to be awake and alert and have the strength and energy to suck and swallow and breathe. The VSD caused her to breathe faster and had difficulty staying awake and sucking as these activities to her were like running to an adult.
The nurses at Tacoma General Hospital are very pro breastfeeding and they have great Lactation specialists that are there to help you and your baby everyday. First we worked with nipple shields and then bare skin. We also did kangaroo care whenever possible, especially at first when she was very new. Although I tried as much as I could to do kangaroo (skin-to-skin contact) for some reason it usually stimulated her too much and her breathing rate would go too high.
We also worked with the bottle, we were willing to try anything to help River be able to learn to have a nutritive suck (not comfort sucking like on a pacifier, but actively learning how to do the suck-swallow-breathe reflex) even if that meant she may take to the bottle over breast-feeding. But by the end of her stay I was willing to do anything to get her home, it was so painful to have her in the hospital, and because she was gaining enough weight everyday that she was not a candidate for immediate VSD repair, they wanted her to get as big as possible before subjecting her to open heart surgery. She continued to have most of her feeds through the NG tube, so I learned how to do NG feeds from home. I learned how to drop the tube and make sure it was in the right place, and how to feed her on a very specific regimen to keep her growing optimally. She had to be on dense calories because her VSD effects made her burn calories so rapidly.
She came home on the NG tube, and on Neosure formula. We routinely saw a dietitian to closely follow River’s growth and nutrition. In the next 2-3 months after she was home she began to develop a reflux disorder. Slowly over the summer she seemed to have more frequent spit ups and vomits than before. And before we knew it she seemed as though she was vomiting everyday. I took her to her pediatrician who put her on Prevacid, but did not send us for a GI consult. unfortunately for River, her reflux disorder was not caught early enough on, and right before we made the decision to have her VSD repaired when she was 5 months old, her vomiting got so bad she began to refuse to nipple any feeds. At that time she was nursing on average one or two times a day, and she would last about 5-10 minutes. Sometimes my let down was too much for her to handle and she would gag and then stop nursing. She would also take a bottle sometimes, but usually couldn’t take more than 15-30ml at a time before tiring out. We also suspect she was having trouble with the calorie content of her formula, and/or the type of formula. The combination of gaging on my breast, the other vomiting that would occur sometimes after a gravity NG feed, and possibly a reaction to either the formula or calories, caused her to abruptly stop nursing or bottle feeding around mid August. I pushed for the surgery, and we proceeded ahead with her VSD repair at the end of August.
While recovering from her surgery we finally got a GI doctor on her team. He felt that her reflux diagnosis fell through the cracks, probably because she was such a complicated case and everyone mainly focused on her cardiac condition. We all felt that we could give her sometime still on the NG tube and see if we couldn’t get her feeding orally now that her VSD was repaired. By then her oral aversion was in full swing. While in the hospital during her recovery I decided to give up pumping since I was barely producing anything, and they wanted to switch her to a hypoallergenic formula and suspected that maybe my milk was the culprit. She was also not nursing and not simulating my production. And I was in so much emotional pain over all of it I couldn’t stand the pump anymore. I tried one last time in the hospital to nurse her, she was sucking at my finger and crying and I had to try. She gagged at the mere sight of my nipple and screams whenever being held in the “cradle” position. I mourned my loss that night, my loss of that nursing connection with my daughter, hell I still mourn it all the time. Not only can I not nurse her, I can’t even have the connection of giving her a bottle. The best I can do these days is hold her and cuddle her as much as humanly possible.
Fortunately we had Speech Therapy coming to consult on her, and already having an SLP for my son, she had given me some tips on helping combat oral aversion. I constantly encourage her mouthing things, but you can only go to a certain point because I also have to be extremely vigilant on not causing a negative experience to happen anymore for her when it comes to oral activities. She had learned that breast-feeding and sucking even on a pacifier would cause her to vomit and she became defensive and that is what “oral aversion” is for River. So now when we work on oral skills if she has a gag or a vomit we change what we are doing, or find something quickly to cheer her up, or stop. I also try to stop on a high note when working with food or oral tools.
River has now been in feeding therapy since 6 months old. It is slow going and slow progress, but progress non-the-less. Since beginning, River’s gag reflex had moved up to the tip of her tongue, it is now currently located in the center and back half of her tongue. Gag use to occur even at the touch of the roof of her mouth. It has improved a lot! She willingly tries many new foods and textures in her mouth. She can swallow fluids and soft foods, but does so very infrequently. The next step is to start the occasional peer therapy sessions. She is old enough now that seeing peers might help her in wanting to eat. For River in particular, she actually wants to eat. A lot of oral aversion babies don’t. It’s really hard to see her try foods and want more, only to end in a large gag or vomit. Sometimes emptying her whole tummy and turning red. But for her this will still result hopefully in progress. Desensitizing her gag reflex is a big key to this. And the more she explores with her mouth the better it will get.
Below is a picture of my “tool box” of items we use to help River’s oral skills. One of her favorite things to chew on is her fingers and thumb, but also cloths. Especially when she is having a bath I always give her a very wet wash cloth and rub it inside her mouth and all over her face and make sure some water gets in her mouth, and since she enjoys bath time so much this is usually very pleasant for her.
I forgot this very important toy! It vibrates and is very good to use for stimulating her mouth. It’s supposed to be soothing for little ones when their teeth are coming in. I found it at a grocery store, I see them just about every major store I go in.
I recently found a great new item! River responds well to it, and I have even been able to get the brush part in and move it around her mouth! Love the unique shape!
Our tube weaning was a success in the sense that it gave River amazing progress! She is now an oral eater without much aversion, and can eat about half of her daily needs orally.