Tag Archive for cleft palate

More learnings after Oscar’s operation

Oscar close up

Oscar’s recovery has been remarkable but he has struggled to drink from a bottle during this time. The specialist nurse had warned me that it might be two weeks for feeding to get back to normal but it has still made me feel stressed that he might not be getting enough hydration. Below are some ways I dealt with the situation

  • Add formula/breastmilk to meals wherever you can – I added it to everything I could
  • Thicken some breastmilk/formula and offer it on a spoon – I mixed in banana porridge and offered in addition to all meals
  • Offer yoghurts as desserts or as snacks to ensure your baby still has some dairy
  • Little and often – Offer yoghurts or thickened milk between meals
  • Watch out for wet nappies – these are a sign of hydration status. Your little one should have roughly 6 wet nappies a day
  • Contact your specialist nurse if you have any concerns – Even as a dietitian I wanted to check I was during the right thing. Don’t feel you cant’t call, that is what they are there for.
  • Keep trying with the bottle but don’t force it
Last night Oscar finally accepted his bottle. I felt quite tearful I was so relieved. And he even made some sucking noises (something he could never do before the operation)! It’s funny that accepting the bottle has been such a milestone for us but I guess it accompanies a sense of things returning to normal. We are so grateful to modern medicine and that we have been able to have this operation in the first place.

TOP TIP: Keep an eye on the number of wet nappies if you are worried about your little one’s milk intake

Feeding around a cleft palate operation

Oscar High chair

Oscar had his palate repair operation this Monday. It’s been an emotional and exhausting week but we are relieved to be the other side of the operation. We have been amazed by how quickly Oscar has bounced back. We had our first smile on day 2 and he has been smiling ever since. We are so proud of our little boy for getting through it all and a big thank you to all the doctors and nurses at Great Ormond Street Hospital. A truly amazing and humbling place.

Below are some of my learnings. I hope these can help you if you have a child with a cleft palate. Please feel free to share any thoughts you may have as every child is different and other parents can benefit from your experience.

Before the operation

Oscar’s operation was booked for when he was 7 months old. I was pleased with this as we had ample time to get him used to solids before the operation (we started weaning at 5 months) and would have plenty of time after the operation to progress weaning before he turned 1 year old (the key milestone for getting babies off the bottle and onto family meals).

  • Get to know your child’s eating habits and what they like eating. This will be important when encouraging them to eat after the operation e.g. enticing them with their favourite food.
  • Get your little one well established on solids as the liquids like milk may not be accepted soon afterwards.
  • Introduce the free flow cup. This may provide another option if your baby refuses his bottle
  • Prepare for the nil by mouth period. We knew Oscar would only be going into to surgery after 8.30 in the morning. A few mornings beforehand I started delaying his 7.00 milk feed so he would not be completely distressed on the morning of the operation. Distracting him with a few new toys also helped!

After the operation

It’s an emotional and tiring time but there are things you can do to help.

  • Try to get your baby eating asap after the operation (only if advised by your cleft team). The surgeon informed us that those babies that get eating soon after the operation bounce back quicker.
  • Solids were accepted before liquids. Oscar did not enjoy liquids at all. Apparently this is because liquids are harder to swallow with a sore mouth. Instead we made up some baby porridge with formula so it was runny but could be eaten off a spoon. We also managed to squeeze some puree into his mouth from the ready made baby food pouches.
  • Hydration is important. If they are not drinking, try to sneak liquids into them another way. Add formula or breast milk to purees or prepare baby rice/porridge/cereal with formula or breast milk. We also syringed small amounts of milk into his mouth every now and then.
  • Play with textures. I tried several textures with Oscar before he accepted one. Just keep some milk to hand and mix it in with the porridge until it is just right for your baby.
  • You know your child. Banana porridge was Oscar’s favourite and we had that for all meals for 3 days. He also loves his bouncing chair so we brought this with us to the hospital. He refused to eat anywhere else for the first week. It was a challenge for us as we had to hold it when I fed him so he did not bounce onto the spoon but he was happy so worth it!
  • Try to give milk off the spoon if they won’t accept a bottle.
  • Try feeding little and often. Oscar could not manage much at a time so we fed him whenever he was up for it.
  • Don’t push your baby. I was desperate to get food into Oscar but had to remind myself that he had just had a big operation. Its important for them to eat but you don’t want them to get more upset than necessary. Take a break and try another time

TOP TIP: Don’t worry about how much they are having or giving them balanced meals after the operations. Just feed them their favourite meals and go for the ‘little and often’ approach.

Weaning with a cleft palate

Oscar smiling at me

Unfortunately Oscar was born with a cleft palate. It’s quite common in the UK and 1 in 700 babies are born with a cleft palate. Feeding has been slightly more difficult as he is unable to suck (he can’t get a vacuum to suck) and so we have use a special squeezy bottle to give him milk. We effectively ‘squeeze’ the milk into his mouth and he drinks it. Sometimes the milk goes up his nose and he does get a lot of wind but he is doing very well and thriving.

Weaning presents it’s own challenges but being a dietitian has given me confidence to overcome these.  Here are a few things I have learnt along the way;

  1. Weaning is really messy. Food does go up his nose and he sneezes alot. Never wear a white t-shirt when serving carrots!
  2. Give drink breaks. Between mouthfuls of food give some sips of milk (formula or breastmilk) or water to help your baby clear out his mouth/nose.
  3. Play with the texture. Stage 1 purees were too runny for Oscar. They kept going up his nose. I found that by adding baby cereal, rice or porridge to fruit/vegetable purees to make them thicker helped a lot. Every baby is different so you may need to play with the texture to get it just right for your little one.
  4. Be careful with citrus fruits. Oscar has not had any of these yet but I have heard these can be harder to tolerate due to the acidity
  5. Get advice from your cleft team. We were advised to start weaning at 4 months so Oscar would be used to solids by the time of his operation. Please follow guidance from your cleft team.
  6. Alot of the normal weaning advice still applies. Like all babies, your baby still needs to experience a range of textures and flavours by the age of 1 year. this is to ensure that good eating habits develop for life. Don’t be put off by the cleft palate!

TOP TIP: Weaning is pretty much the same with a cleft palate baby. You may need to make a few minor tweaks but it is still a fun adventure and Oscar is really enjoying his food.