Short Gut Syndrome: diet and weight management

With most babies, weight gain is considered a sign of success. After the early stages, you get baby weighed every few months to check all is well.

With Clara it’s a little more complex.

We’re getting her weighed weekly at the moment since she lost a chunk of weight when she had rotavirus. Clara had been tracking on the 25th centile for her corrected age (25% of babies this age weigh less than Clara, 75% weigh more), but her Gastro team want her up to the 50th centile as that’s where her height measures. That’ll take some work!

Clara suffers from malabsorption as she lost so much of her small intestine. Her time on Parental Nutrition (PN) saved her life because without it, her bowel was not ready to absorb enough nutrition or hydration to survive. Miraculously, Clara is no longer dependent on PN and can enjoy a fully oral diet. However, that doesn’t mean it’s straightforward. Clara also lost her ileocecal value (ICV). The ICV was a one way valve which filters digested food matter from the small intestine to the large – without this the matter flows much more quickly (and therefore less can be absorbed back into the body) and bacteria can return back up the intestine. A missing ICV also significantly increases the risk of kidney stones – short gut babies wee a LOT!

Clara’s dietary needs are basic, yet complex. Hear me out…

  • Prescription formula: Clara drinks Aptamil Pepti as its hydrolysed (broken down so her body can absorb the nutrients quicker) with a very very small amount of lactose (a tiny bit for taste only).
  • Low fat: we’ve discovered that artificial fats (such as cooking oil when making roast potatoes) causes almost instant diarrhea for Clara
  • Low/no sugar: so far natural sugars such as those found in fruit seem to be tolerable, but artificial sugars also cause diarrhea as they pull water into the intestines. So no cake, biscuits or puddings for Clara!
  • High carbohydrate
  • No dairy or lactose
  • No onions, broccoli, baked beans, garlic (they make Clara really gassy and uncomfortable)

Have I confused you yet?

Here’s what she can eat:

  • All protein: beef, chicken, fish, eggs, pork
  • White carbs (refined and low fiber complex carbs): white bread, white pasta, white rice, potatoes without skin on, rice krispies
  • Soluble fibre: chick peas, oats, fruit, smooth peanut butter
  • Carrot (we’re still working out which vegetables she can tolerate.)

It’s pretty tough to get Clara to pile on the pounds. She’s eating the dream diet right? Low fat, low sugar, high carb and protein – aiming for 1/3 more daily calories than other babies her own age. That’s not a fat person’s diet! It feels pretty hard to get variety in too.

Last week we weighed Clara and she’d jumped from 7.1kg in A&E to 7.72kg! An incredible leap, almost unbelievable.

This week, Clara weighed 7.68kg – a drop.  A small drop, but a drop. It was devastating, we’d tried so hard we genuinely believed she’d piled on so much more weight. But, she’d been eating less. And, she’d had diarrhea for a couple days because she’d had homemade roast potatoes (oil!) and there were traces of onion and garlic in the shepherds pie seasoning I’d used (doh!). It felt like a personal failure – I’d not cooked the right things for her and she’d suffered as a result both physically but also on her growth chart.

We’d been advised to over concentrate her formula this week (please do not do this without advice from a pediatrician) but I think it was just making her that little bit more full, so she was less interested in finishing her actual food. Having not heard back from her team, we’ve gone back to standard concentration formula and already her appetite has increased. We’ll continue as per their advice on Monday, after we’ve reported to them how the weekend’s gone.

An example day in Clara’s diet (today’s food):

Breakfast: 30g rice krispies, 50ml milk, 100g pureed strawberries and apple (or a whole banana), medication

Snack: 100ml Aptamil Pepti

Lunch: 100g rice, chicken, and peas

Snack: 150ml Aptamil Pepti and medication

Dinner: Beef stew (beef, potatoes, carrots), 120g pureed peach and mango

Snack: 150ml Aptamil Pepti and medication

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