After spending an afternoon out at the Cleft Palate Clinic at Westmead Children’s Hospital with Sophie this week, I am in in complete awe of the human body, how it works and how it can adapt (with a great bit of determination from its owner!) to overcome structural problems.
When we bring our bundles of joy home, we care and feed them as best we know how to. Babies can be vomity – it’s reflux apparently, their weight gain will fluctuate, their sleeping will be hit and miss, and they will all develop differently with very different personalities and quirky traits. This is what we are told by the “experts”. We dutifully weigh and measure them, express our concerns about their feeding, the contents of their nappies, their skin, their sleep, usually always to be told that no two babies are alike.
Our two babies were certainly nothing alike, except they were both about the same size at birth. Sophie was classified as a reflux baby, had milk coming out her nose, and the vomits needed bath towels, not those cute little over the shoulder burping cloths. She screamed the whole way home from the hospital in the car, sucked her thumb, moved a lot, hated crusts, but grew well enough to be told that she was fine.
Deep down there was something telling me there was something more. As she grew, the reason for not liking the car became obvious – motion sickness. Cow milk seemed to gum her up but the all-wise doctor just prescribed laxatives (didn’t give them to her) – appears she is casein intolerant (not officially diagnosed as the doctor didn’t seem to think blood tests were accurate enough) but can handle goat milk. Puffy sinuses and snoring – enormous tonsils and adenoids that were removed. Shortly after, she started eating crusts, harder foods and she even stopped sucking her thumb. But she still wasn’t talking and still seemed to be struggling with eating. I even bought a hand-held vacuum just to clean up around her seat after meals!
After 2 years of speech therapy she is making all the sounds but still there was something not right about the quality of those sounds and she was aspirating food and thin liquids. She has even been banned from using a straw! Recurrent nose bleeds saw us going back to the ENT who then diagnosed significant velopharyngeal incompetence which has its own speech and feeding issues.
Our lovely speech therapist organised for us to go to the Cleft Palate Clinic and even came with us yesterday. After watching Sophie have a barium video x-ray which also meant squirting barium up her nose, and an endoscopy up her nose, wide awake so she could talk and three specialists and student doctors all watching, observing and talking, we finally had some reasons.
Structurally, she has some palatal problems but her body and her sheer determination to speak and her need to eat has meant she has used different muscles to speak and to close the gap when the palate would normally do it. Amazing! It’s not perfect but it explains so much! Her exposed Eustachian tubes may even explain her motion sickness.
Finally, there are some answers to this puzzle. We must remember to listen to our bodies, learn what they are trying to tell us and respond. I believe, nothing happens without a reason and if something is happening to the body, it will probably show symptoms. Don’t just accept that that is the way some people are. It may be but then, it may be trying to say that something is wrong. If it weren’t for Sophie’s bleeding nose (which seems to have stopped now) we would probably have just kept going along with no explanations.
Why fuel this amazing natural phenomenon on a daily basis with bad food and chemical concoctions proclaiming to be food? Never say never (life’s not meant to be strict and boring either!) but listen to it and work with it.