Oh hello @Beastlybeautiful
Really hoped this thread would help others or those who’d come to find it useful — so very sorry to hear of your experience with the little one and having back to back occurrences, wishing you all peace, recovery and restoration during this time — hand holding fiercely for you. I do remember those days where time seemed to have stopped entirely and was desperately searching for answers or even just similar experiences.
Now, I will proceed by emphasising that I am not medically trained whatsoever but will share my experience with my LO… I noticed it at 6 weeks from the off and was told multiple times by midwives and GPs it was only Acid Reflux and my worries were being dismissed… repeatedly. I had no idea what it was or why but I knew I needed to advocate and advocate ferociously till I thought I was losing my mind myself but it was painful to see my child, what seemed to be, struggling to breathe at every feed. I then grew fearful and dreaded when it was feeding time. I knew I couldn’t carry on.
Fortunately, my husband was able to get Private Insurance and quickly whereby we saw 3 consultants over the course of 2 months and who specialised in aspiration. I would not rest and pushed for appointment dates to be soon made after another. We had a Swallow Test Study done via Chest X-ray and it was the most daunting thing I’d ever seen. The fluid directly seeping into my child’s lungs. The consultant trialed a thickener with formula straight away and it corrected it immediately and we were then prescribed thickener and this was the new course of action. We saw a top ENT to determine the “why” in Central London who mentioned it may have been the cause of a weak larynx whereby they may have needed to intervene by stitching it shut, yet this would only be done if my LO had been hospitalised frequently. It is a common practice and was assured if needed, all would be okay. However, until then it was recommended to proceed with the previous consultant’s advice to continue with thickener.
…Now… my LO was also experiencing CMPA at the same time and I was hesitant to start formula as my LO also wouldn’t take a bottle after latching on during breastfeeding so well. Midwives and GPs repeatedly told me to feed upright if I wanted to continue breastfeeding; HOWEVER, I researched endlessly, days and nights and found many studies where this actually causes aspiration as it is an unnatural way to feed for babies. SO…may sound quite simplistic and anticlimactic, yet to this day… we’ve seemed to have ultimately corrected it by lying side on and side-laying feeding. This was the only time I noticed my LO wouldnt splutter and cough up fluid. Since, we think our LO has now outgrown it with the minor incidences of swallowing water too quickly but seems to be more neurological and when distracted while playing with sippy cup. We will have another follow-up after 1st birthday.
Once again, this has worked for us and has done now for 9 months later with ZERO issues since and no hospitalisations and now we’ve got a very healthy, active and strong solid child whom no one would have ever believed the bumpy start we had or any issues with feeding.
If I may, please do be cautious when researching as I’m certain you will be looking for answers just as I did. To the point I was reading medical journals from east to west and staying up for god-awful hours watching X-ray videos and audio recordings of swallows to determine if my child’s was similar. Everyone’s journey is different and from what I’ve seen / heard… it somehow gets better and more manageable over time.
I sincerely hope this helps, cannot stop thinking of your little baby as I begin to remember mine during those early and uncertain days but it will get better…❤️