Gastrostomy in Growth Conditions

Gastrostomy in Growth Conditions

Feeding Difficulties and Gastrostomy in Growth Conditions

Some babies born small for gestational age (SGA), or those with a diagnosed growth condition such as Silver-Russell Syndrome may experience feeding difficulties. This can range from mild to severe and can be a very stressful time for a parent or carer.

If a baby or child is experiencing feeding difficulties and their growth and health is being affected, they usually have assessments and investigations to determine the cause of the feeding difficulties. They may also have several different specialists supporting them, such as a dietician, speech and language therapist and a paediatrician. The specialists may prescribe high calorie milk and develop feeding plans and strategies with the parent/carer to help with weight gain. However, for some children/babies, the feeding difficulties may be so severe that they might require additional support to ensure they have enough nutrition to help them grow, develop, and keep them healthy. Assessing and deciding on supplementing nutrition with tube feeding is made on an individual basis, taking into consideration the child’s age, medical needs, and the period of time for which nutritional support is likely to be required. A first option could be to give feeds through a nasogastric tube. This is a thin plastic tube inserted into the nostril and passed down the food pipe into the stomach. While this is an effective way of feeding directly into the stomach, it is seen more as a short-term solution to boost calorie intake.

A solution that provides sustained calorie intake is to fit a gastrostomy tube, sometimes referred to as a gastrostomy peg or feeding tube. This has the benefit of being less visible than the nasogastric tube but, it is usually only inserted if there is a need for the child to receive nutrition in this way on a long-term basis.

What is a gastrostomy?

A gastrostomy is a surgical opening through the skin of the abdomen to the stomach. A gastrostomy tube is put into this opening so that special feeds, that contain extra nutrients, can be given directly into the stomach. There are different types of gastrostomy’s available, the medical team alongside the family will decide which type of gastrostomy is most suitable for the child. A short operation under a general anaesthetic is required to insert the gastrostomy, following the operation, the parents/carers will then start to receive training from the hospital/ward staff on how to use and care for the gastrostomy. A community nurse and or gastrostomy nurse specialist usually continue to train and support families at home in managing their child’s gastrostomy.

Using a Gastrostomy

When a child has a gastrostomy, the family alongside the doctor, dietician and speech and language therapist should agree how and when it will be used to give the feeds. The best interests of the child should be the primary goal, just because the gastrostomy tube is in place doesn’t mean they will be fed solely in that way, depending on the child’s health needs they may have overnight feeds into the gastrostomy or ‘top up’ feeds after family mealtimes. Sometimes a special electric pump is used to deliver the feed over a period of time, or the child could have ‘bolus’ feeds which can be given using the pump or a syringe.

Further Support

You can find out more about gastrostomy feeding by downloading this Great Ormond Street Hospital guide:

Or, you can contact us

0208 995 0257

Virtual Convention 2020

Virtual Convention 2020

Virtual Convention 2020

In October we delivered our (un)usual annual convention, which means that traditionally, on these pages, we bring you gloriously amazing pictures of fancy dress frivolity featuring superheroes, Disney characters, festival hippies and so much more. This year, we bring you a zoom meeting…

Yes, it was different. Yes, it was COVID and yes, it was lockdown. But we made the best of it! We were actually very nervous about it. We had some fabulous speakers and presentations lined up. We had the wonderful membership family ready to engage. We had an army of volunteer support. But what if the technology lets us down? What if broadband breaks? What if Zoom melts?

What if Neil sent out the wrong link for the first day of the Convention and only discovered the error half an hour before it was due to start! Surely, that would never happen – erm, well yes it did, and he is still very embarrassed about it!

That hitch aside it all went swimmingly well. All three days were thoroughly engaging, interesting and informative. We shouldn’t really be surprised. The Child Growth Foundation is built on connecting parents & families with each other and with the very best experts in the field. And that is what we did again. Fantastic speakers but more importantly all those who attended came wanting to learn, wanting to ask, and wanting to share. We all agreed the lack of the physical togetherness was a shame, but do you know what – it still felt a very close and intimate day, it felt like we all connected and it turned out to be a very personal, and enjoyable few days.

A Convention, but not as we know it…

Saturday 24th October – SRS/IUGR/SGA

The first day covered SRS/IUGR and SGA and was kicked off by a live Q&A session with Dr Justin Davies, that could probably have gone on all day! It didn’t, which is just as well as there were some fabulous talks lined up. Dr Helen Storr provided an update on the GRASP project findings and Dr Deborah Mackay gave us an overview of genetic diagnosis of SRS and SGA, as well as an update on the SRS research study the CGF is currently funding. We broke for lunch, and some left their cameras on so we could see what they were having! Before we all returned for an afternoon that explored adult health issues in SRS with Dr Karen Temple and cognition and behaviour issues in SRS with Dr Megan Freeth. The day finished with a group chat.

The support from the speakers was fantastic, some were recorded and some were live and we have to say a huge thank you to Dr Temple who was actually on holiday, well coming home from holiday, and following her recorded presentation came on live from her car on the motorway (she wasn’t driving!) to answer questions. It was amazing of her to give that time to us, and we were delighted to see her get home safely and be welcomed home by a very excited puppy!

Dogs were quite a theme of the three days, with many zoom-bombing pooches stealing the limelight of the talks!

Saturday 31st October – GHD & MPHD

Day two covered GHD and hypopituitarism and again, was very well attended. It was opened by the wonderful Dr Harshini Katugampola with the fabulously titled presentation “It Takes Two to Tango” which covered growth and puberty.

This was followed by a live, and very hands on, presentation by Endocrine Specialist Nurse, Claire Westcott, who talked about emergency adrenal crisis, sick day rules and management. This session walked us through how to inject, with live demonstrations involving oranges and out of date medical equipment! The oranges felt no pain from the injections but sadly, the medication was out of date so no discernible growth benefit was recorded!

After lunch Dr Helena Gleeson provided a much-needed guide to transitioning to adult services and after that Nurse Specialist Helen Smart gave a thorough overview of management and treatment options for GHD & hypopituitarism . The day was again finished off with a group chat that ended with an impromptu musical performance!

Saturday 14th November – Sotos Syndrome

The third day of our convention focussed on Sotos Syndrome and opened with a presentation by Dr Megan Freeth on cognition and behaviour issues. After a short break we returned to hear a super introduction to Sotos Syndrome from Dr Kate Tatton-Brown, followed by many, many questions.

Then came the amazing double act of Dr Alison Foster and Dr Alice Welham who took us through Sotos syndrome the pre-teen years and then Sotos syndrome the adult years. It was a really well-developed programme that gave attendees much opportunity to discuss concerns, and the speakers hung around throughout, answering questions and providing guidance. The third day was incredibly well attended and the group chat to finish the event went on for some time with a great deal of bonding and peer support. We received a lot of offers of help to build up our Sotos support network and we are incredibly grateful and look forward to what we can build.