Saturday, 10 March 2012

Premature Babies - When Weaning is Not Straightforward

Many premature babies will be introduced and take to solid food in much the same way as full term babies. But for some, weaning will be more difficult with special needs that must be accomodated. The purpose of the post is to raise awareness of these issues. It has been informed by my special mummies, but is not a clinical post or substitute for medical advice.

Today I want to talk to you about weaning when things are not straight forward. There are several issues that can be encountered when weaning a premature baby, but it has to be said that these issues can happen with term babies too.

Severe reflux - all babies are born with immature sphincters, the valve in the oesophagus that regulates the food and fluid travelling down into the stomach. A lot of babies are happy chuckers, some have pain, and in others reflux can be very serious indeed. Premature babies, qutie logically, are more prone to reflux due to their immature digestive systems having to do a lot of work.

Associated with the vomiting and pain is acid build up, like heart burn. The baby may find this is much worse once they are off milk and introduced to solids (although in many cases weaning can actually help babies with mild to moderate reflux)

Swallowing problems - Many premature babies have been on long term ventilation. Some babies can have temporary or even permanent damage that can make eating incredibly difficult. Sometimes this can sit alongside other problems like reflux. Very often parents will be advised to "go back to basics" and keep the baby on pureed foods for longer, and be a lot slower in introducing lumps and textures.

If you feel, during weaning, that your baby is struggling or not making progress, don't hesitate in contacting your consultant or health visitor. Babies sometimes need a referral to a speech and language therapist (SALT) These therapists do more than just help with speech, they can look at functional problems with the mouth and with the swallowing reflex, and sometimes work in partnership with a dietician.

Oral aversion - Some children have had complicated pathways through NICU and sometimes onto PICU (paediatric intensive care units) and have required long term tube feeding and procedures. These children may then be unwilling or unable to accept food or liquid into their mouths at all. Here Carole shares her experiences with her son Luke

Luke is under the care of GOSH London Specialist Feeding and Eating disorder team. Our ultimate aim is to tube wean. My portage worker has been the biggest source of help, the local SALT admits that Luke is an extreme case. We've had to start with the basics. No pressure to touch food, just be near it. Then dry food, handling dried pasta, dry porridge oats, hiding toys in it and getting the dust on his hands. We started off with big spoons (the kind you dish your dinner up with) scooping and pouring the dried food. Nothing went near his mouth. graduated to touching smooth wet food and now Luke will handle messy food, it took us 18 months to get to this stage. next step is asking him to put food to his mouth, lips not even in his mouth. We blow bubbles with straws in milkshake and if he accidently sucks or gets some liquid on his lips then thats a bonus. For Luke the issue isn't about tastes and finding a food he likes (if one more person suggests have you tried chocolate/custard/pear puree/ etc grrr) it about overcoming sensory issues and having to learn what food is because he missed all his developmental milestones (sucking, watching other people eat, spoons, touching and being around food) and had no relationship with food. It doesn't help that Luke has left sided vocal cord palsy so his swallow is never going to be great.
Sensory issues - For premature babies one of the paradoxes with weaning is that we start on actual age, around 6 months.  For a baby born very early, this can mean they are not sitting independently, not touching things much yet, and certainly not handling foods. Imagine everything being fed to you and not being able to touch it. For some premature babies, this is further complicated by underlying issues that cause them to have problems in processing the world around them, and can be symptom of autism (but not always)

Sharron shares her experiences with her son Callam.


Callam, was born at 29 weeks and was not expected to live. He did not breathe for the first 10 minutes of his life. He had total renal failure, a brain haemorrhage and anaemia to name but a few of his problems and was ventilated for the first 7 days of his life. At around 11 days old we were told that Callam had tested positive for CMV (Cyto Megalo Virus).

Callam has lived with a very restricted diet which started from birth with severe reflux up to 18 month of age. He only ate age 4 month puree baby food until the age of 2 years and after this he could not eat mixed textures. The only foods he eats now (age 12) are brown or yellow, coated and with no ‘bits’ in. His main diet is cheese sandwich for dinner and chicken nuggets and chips for tea daily.

Callam has come a long way over his 12 years and things are easier to deal with now as he is starting to try new things but things haven’t always been easy. We have been stared at and talked about and passed judgement on and made to feel like the worst parents in the world.

When he was 2-3 years we would try and ‘force feed’ him as we didn’t know what the issue was then. He could go days without eating and, as a parent, its heartbreaking to see your child not eating and getting thinner, especially when you go to the hospital and see ‘failure to thrive’ on the front of his case notes. We would get people saying “leave him with me, I’ll get him eating” and that would really annoy me as, if that would have actually worked, I would have gladly left him with them. Even his old Consultant said that he would start eating once he started school and saw the other children. Sadly, this wasn’t the case.

Luckily, we found a fantastic Eating Specialist at Birmingham Children’s Hospital, changed Consultants at our local hospital and managed to get a referral there. She suggested various different ways of getting him to try foods including relaxation at age 8 and things have started to improve, although we still have a long way to go.

He has also got a diagnosis of Autistic Spectrum Disorder now and his eating problems are probably because of the ASD but could also be linked to the CMV (Cyto Megalo Virus) he was born with.

My message - If you feel your journey with your baby or toddler and food is not normal and becoming difficult or complicated seek help, but you may need to search for it. A common experience seems to be that Health Visitors, unless you are lucky with a good one, and some are former neo natal nurses, are not aware of some of the complications with weaning premature babies and may not know, immediately, how best to help.

Also, what I want to say is, don't judge. If you see a two year old eating baby food out of a jar, there probably is a darn good reason. And whilst, to an outsider, the solution to overcoming these problems may seem simple "if they are hungry enough they will eat", it's rarely that simple.

25 comments:

  1. Excellent article as always Kylie x

    ReplyDelete
  2. Sharron Entwistle11 March 2012 at 09:06

    Great article. My problem was that my Son's Consultant didn't seem to know where to refer us to (there are very few places that deal specifically with eating disorders) and initially referred him to a Psychiatrist, which wasn't the answer. His Speech Therapist was the one who put us in touch with an Eating Specialist in Birmingham but we struggled to get a referral so had to pay privately to see her first. Once we had our report and changed Consultants we got our referral. It is a long way to go (5 hour round trip) but you do anything to get help for your little ones, don't you - and it has been really helpful x

    ReplyDelete
  3. This seems to be a very common story particularly outside London. It concerns me greatly that its hard to get consistent, multidisciplinary help in these situations. So often I hear of PEG tubes etc being used to ensure the child gets adequate nutrition, but no thought or strategy for the long term. And I've lost count of the number of times I've seen parents request fundraising help to send their child to the Graz feeding clinic for help with getting their kids off the tube. And its not just preemies this affects either. We really need, in the UK, to be stepping up our MDT approach in how we care for our kids that don't fit the norm.

    ReplyDelete
  4. I think your last comment about not judging is really important. My girlie is 18 months and due to oral aversion (which seemingly came out of nowhere and is not connected to tube feeding) we are still only on "stage 1" and that is one good days! You can't half get some funny looks spooning in mush or encouraging her to suck Quavers...

    ReplyDelete
  5. Sarah, Maison Cupcake16 March 2012 at 00:02

    Mine didn't eat solid food until he was at least 2. For about six months I thought I'd never get him off jars of creme caramel and rice pudding (or occasionally hummus, which weirdly he won't touch now) and gradually he moved onto scrambled eggs, squashed beans and very buttery mashed potato. Anything more challenging was puked up a few minutes later and it was very distressing for all of us for A LONG TIME. I was at my wits end as all his friends were eating properly but suddenly he just started eating normally and now he's fine. I think holidays abroad made the difference, we were thrown into a week away where the shops sold different baby food - french baby food is thicker, even the stage 2 stuff and Ted took a liking to chomping on French stick! A year later we had made a lot of progress and I managed to get through our next holiday without using any jars and I thought when we came back, that's it, I'm not giving them to him again!

    ReplyDelete
  6. Thank you so much for writing this post, and your blog. It's a source of comfort and information for so many people.

    My son was born at 35 weeks and after a short stay in neonatal he was allowed home.

    I wasn't too sure about weening him, did I have to wait until he was 7 months old before starting him, would he be ready for weening? As it turned out he was fine at 7 months, after a false start at 6 months, he just wasn't ready. Once he'd got the hang of food there was no stopping him!

    There's so much more to have a premature baby than most people think.

    ReplyDelete
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