Trust Issues

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Yesterday we had a checkup with Charlottes’ paediatrician. I wanted to make sure her growth was still on track and I had some concerns that she was having a regression in her reflux.

The great news was that she is doing phenomenally well considering her birth circumstances, something that again I will never be able to thank Dr. Liezl Oosthuizen, Dr. Purchase, Dr. Boden, Anita Van Wyk, the entire maternity and NICU team at Greenacres Hospital enough for. But more on this team later though and back to Mighty Mouse.

Charlotte has to date defied statistics and hurtled herself full steam ahead of her developmental schedule, amazing her specialists and making her parents unbelievably proud. In terms of her physical growth she is currently sitting in the top 3 percentile of where she is expected to be and developmentally she is advance by 4 weeks in many aspects and on par with the rest.  She is a true miracle and warrior in every sense of the words.  She has minor health concerns that are to be expected of preemies, such as reflux and the need for additional vitamins and nutrients to ensure her system stays strong and healthy and one other concern that has been growing so subtly that it was initially dismissed as my being ‘silly’ but has now grown to the point of being a massive  hindrance in her growth if not addressed quickly.

At the crux of her reflux I started noticing a decline in interest and active participation between my daughter and her bottles. Before her reflux she would make an effort to almost try and hold the bottles, finding a spot for me to hold the bottle and give her space to ‘hold’ it was part of our routine and dynamic.  As her illness progressed and drinking became painful for her she started showing less and less interest in her bottles. When we were admitted to hospital for observation I voiced my concerns to the nurses, who assured me that she was far too little to associate pain to her bottles and I was being silly for the thought. By this stage she had totally refused to drink a bottle at all and we were forced to place an NG Tube down her nose and throat in order to Bolus feed her to get her daily intake in and keep her hydrated and nourished while observations took place to confirm the severity of her reflux.

While her appetite returned and she drank after our hospital stay, I couldn’t help but to notice that she had a lack-lustre attitude towards her feeds, she would turn her head away, shake her head vigorously, push the teat out of her mouth with her tongue and smack the bottle away from her mouth.  All of these attributes I was told, related to reflux so we pushed forward, which as it turns out was a grave mistake on my part and she is now suffering the consequences.

Last week she progressed with her new habits and I started getting an idea that something else was afoot. I did some homework and thrush was one of the suggested issues, so off to the pharmacy we went, the pharmacist confirmed she had thrush and we went onto treatment immediately, but her symptoms progressively got worse, she seemed to be actively gagging herself on every bottle, getting her to drink was hard enough and now we were struggling to keep in what she had managed to drink. Progressively it got worse and over the weekend she was drinking two thirds of what she should and actively attempting to throw up each bottle both during feeds and after.

The result from our checkup however is that she in fact does not have thrush as I had been told by the pharmacist.  She also does not have an inflamed throat, and thankfully her reflux has not gotten worse.  So now I was truelly puzzled as to what was causing our new issues, afterall, I was told that her associating the bottle to pain was laughable and silly.

After an extensive chat with her paed and a lot of medical research (yes, I Dr. Google and after 6 months of dealing with articles on pre-eclampsia and prematurity, I’m well versed in what websites to read and what to avoid like the plague) her issues seem to stem to two semi-relateable sources:  ‘Gag Reflex’ and  ‘Oral/Feeding Aversion’.

Her gag reflex may well have stemmed from two sources, the first source, being from her days in NICU, it is quite common for preemies who were previously intubated or ventilated to become over sensitized and fearful of foreign objects being too close to their face or entering their mouths. They associate pain and discomfort with foreign objects and need therapy to regain trust in bottles and in physical contact.  The second source of her gag reflex is the association that  drinking causes cramps, pain and discomfort, so naturally her fight or flight mechanism kicks in and she actively refuses bottles to prevent harming herself.

Oral Aversion can be best described as follows:

An aversion is the avoidance of a thing or situation because it is associated with an unpleasant, stressful or painful stimulus.  A feeding aversion refers to a situation where a baby – who is physically capable of feeding or eating – exhibits partial or full food refusal.  Babies can develop an aversion to breastfeeding, bottle-feeding and/or solid foods.

An aversion involves a conditioned response.  Initially, baby ‘ s fussy or distressed behavior occurs in direct response to the stimulus (the thing or situation causing the feeding experience to be unpleasant, stressful or painful).  However, following repeated exposure baby learns to associate the act of feeding or eating with the stimulus and may then start to fuss or refuse to feed or eat prior to the stimulus occurring.  This can make it challenging for parents and health professionals to accurately identify the stimulus.  

Failure to identify and eliminate the stimulus means baby’s conditioned response (aversive behavior in regards to feeding or eating) may continue to be reinforced, and thus her fussy feeding behavior or food refusal can continue for weeks, months or years.”

Charlottes combined history of being ventilated, her reflux, the time it took to diagnose and treat her reflux and the best uneducated intentions of her mom have resulted in a ‘condition’ that will require a lot of effort on moms part to gain her trust of her bottles again, it will be an exercise in patience and understanding, as any mom will know, a baby which refuses to drink is one of the most demorilising aspects of parenting in the early weeks and months.

If you are battling with a baby that has reflux and fights their bottles, perhaps this is something to take note of.  If left untreated these babies have issues later in development, particularly when being introduced to solids as they are not ‘desensitized’ to different textures and are already untrusting of their existing sources of nourishment.

For more information on Oral/Feeding Aversions please see the following links:

http://www.babycareadvice.com/article/detail/Feeding_Aversion

http://www.reflux.org.au/articles/feeding_tips/feed-refusers-strategies-and-options/