Geoffrey was given an NGT at 14 months because of severe reflux, aspiration problems and insufficient weight gain. Kitty held a family dinner to educate all her close relatives on why he needed a tube, so they wouldn’t be alarmed or scared by it. She said just like you wear sunglasses on a beach to help with sore eyes, the tube helps him eat (see What to expect to read her full explanation!). She also used this as an occasion to demonstrate how to do the tube-feed.

Kitty feeds Geoffrey in front of her family, her baby sitter and her friends. She thinks it’s the parent’s responsibility to show confidence and to take the child out, normalising the tube for other people and letting the child socialise.

Geoffrey had been going to a playgroup and then childcare from 12 months. He was loving it, but when his NG was put in, she had to (reluctantly) withdraw him because they weren’t able to manage his tube-feeds (see Ruth’s Real Story for how she was able to teach her daycare staff to do the tube-feeds). Worried that he would become isolated only with her and the babysitter, she made a big effort to take him out to the park and have playdates with other children, and do lots of fun things with her family. Every day, she did something to keep his social life going.

Now Geoffrey is 18 months old, Kitty looks back at the early days of tube-feeding and remembers nearly all her conversations with paediatricians focused on eating. However, she feels that as a parent you’re really worried about the child’s development. So, she was also concerned about what she could do to help his all-round development, even while he was tube-feeding. This is one reason why his social life was so important.

Kitty thinks that although you can have a normal life with a tube-fed child, there’s extra work involved, including learning how to apply and change the tape, and all the additional attention you give to encouraging oral foods and preparing special purées and so on to spark their interest.

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His cleft lip was partially repaired at 10.5 months, but there is more surgery to go. Looking back on Tony’s first 12 months, Hannah describes it as a ‘humbling experience’ that has ‘grounded us a lot’. Despite having raised four other children, she found she really learned the important stuff through Tony: attitude, kindness, and being understanding and open to other people’s struggles.

Tony had open-heart surgery and an NGT was inserted at four days old. Hannah avoided going out because of uncertainty of what was ‘socially acceptable’, and fear of what people might say about the tube, which she found ‘visually confronting’. This meant an enormous adjustment for the family, because was Tony not always able to socialise with the other children. Hannah had wanted to stay at home initially but then felt she and Tony needed to get out (see Getting the balance right).

Hannah took Tony back to hospital most days to get it reinserted, and initially felt that this ‘took the pressure off’ as they didn’t have to worry about it themselves. However, once they realised the tube-feeding would go on longer, Hannah learned how to re-insert the tube. Generally Hannah felt the support from the hospital was great, though she thinks they didn’t really prepare her for the importance of taping and how to do it (see Tips and Tricks for Hannah’s description of what they found worked for them).

When Tony was nine months old, the feeding was not progressing well, so a decision was made to go with a PEG. Life for the family has changed since then. Tony is more regularly and fully engaged in activities like swimming, and far less planning is required for days out and holidays, which makes everything less stressful for everyone. They can feed Tony using the PEG while they are out and about.

Hannah takes main responsibility for feeding Tony, but Joseph helps out by caring for him while Hannah gets things ready. She’s developed lots of workarounds and strategies for feeding Tony, especially including him in family mealtimes.  While Hannah recognises the tube is vital for nutritional reasons, it remains important to her for Tony to learn to eat and swallow, to taste flavours and experience textures in his mouth, so he gets to join in the family meal and play with / eat food orally. Afterwards, when she does tube-feed, she keeps him occupied during a tube-feed so he doesn’t fidget and pull it out (see Tips and Tricks).

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Tony’s NG tube was inserted when he was four days old. About a year later we switched to a PEG because he had some surgery coming up. There was a feeling of liberation then – lots of things were so much easier. Six months later, the PEG was still in, and we realised it was going to be there for a while.

We decided to try to develop Tony’s interest and skills in oral feeding. We worked with his whole care team to get a picture of all the medical boxes we’d need to tick in order for him to feed orally.

Our approach was gradual, gentle, and above all focused on fun and enjoyment. We reduced his milk intake and offered him food every day. We responded to what he liked, keeping within what was safe given the structure of his mouth. We made food fun, and built lots of positive associations by eating together, taking him out to coffee shops, and involving his siblings.

When more surgery was needed, we had to accept that the PEG wasn’t going anywhere soon. There was no point removing it only to put it back in again because of surgery. But we continued with getting things set up so when the time came, he’d be ready. By now Tony was showing lots of interest in food, exploring textures and eating a full diet.

A window to wean from tube came up when some surgery was delayed, nearly 20 months after the PEG was first inserted.

We realised Tony was hardly tube feeding! We had ticked a lot of the boxes, so made the decision to ‘shut the tube down’ – pretending it wasn’t there. This might sound strange, but the PEG makes many things easy, so it wasn’t always easy not to use it.

We had the aim of going 3 months totally tube free. But we also wanted to check he’d be okay without using the tube even when he got sick. We reached that 3-month mark without using the tube, but he still hadn’t needed any medications, so Joseph and it wasn’t yet time. We shifted to a monthly reassessment. That was in July.

In August, he got a slight fever. His appetite dropped, but he kept drinking water and we tried things like bone broth. We gave him Panadol with a syringe. He didn’t like it, but he swallowed it! Two more times and there it was: another tick! That was my ‘data’. I knew if we removed the tube and he got sick, he’d be okay.

The checklist was complete, but we decided to wait until Spring. By the end of October that year, we decided we were ready. It was just a question of waiting for the moment. We asked the hospital for advice about removing the tube. We realised we needed to be 100% confident: no regrets.

I remember the day well: 24th November, 25 months after the PEG was inserted. Tony was asleep, it was quarter past ten at night. I just sat up in bed and said “This is it!”. I felt confident, everything was in place.

In the end it took just 90 seconds! Tony didn’t wake up. There was no leakage, the site was clean. The next morning, he drank some water – no leakage! Tony knew something had changed, but he ate normally.

I feel grateful. Yes there were days I disliked the tube, but ultimately it’s what kept Tony alive, took the pressure off my family, and what allowed me to do all the work around fun and positive associations that got us where we are today: tube free!

It wasn’t possible to confirm a diagnosis at this time, although the health team suspected an immunological condition, which meant keeping Harry at home to isolate him from disease.

Harry vomited frequently when his NG was in, up to 20 times a day. This made it really hard for Eric to know how much food he was actually getting. He initially started feeding him small amounts with a syringe, and then a pump, learning to alternate between feeding and waiting to keep the food down. At 7 months, Harry was unable to take 70ml per hour without vomiting. This continued to keep them isolated at home, meaning Harry lost the chance to socialise with other children.

Harrys’s PEG was inserted when he was 11 months, something Eric feels was ‘brilliant’. Despite the doctors’ advice, he started taking him out, feeling that him socialising with others was important, so he can start have a little bit of a more normal life. When he needs to feed him, he just goes to the parenting room or the toilet.

Eric has been trying to help Harry to eat orally, although vomiting is still an issue. A dietitian recommended a blender diet, and he started by looking up recipes online, and how has his own repertoire of meals that suit Harry and their family. He finds thicker blends help reduce his vomiting. Eric likes this because it’s only three meals a day, giving Harry time to play or time for them both to go to the park.

Feeding was up and down for several years, as Harry’s oral aversion didn’t go away, and got worse when he was sick.

Harry is now three years old, and was recently diagnosed with a genetic condition that affects his blood vessels. He’s on medication for that, and one change has been that he has started eating – reaching out for a biscuit, starting to bite, chew, and even eat soft food like noodles, dumplings and fried egg. When his medications were reduced, his appetite dropped a bit too, but he’s still nibbling table food, and has used to use a spoon to feed himself soup, and to drink water from an open cup.

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Ruth and Andy’s family live overseas, so they didn’t get much support at home. Ruth spent the first eight weeks at home focusing on managing Luke’s complex medical needs and trying to feed him. He had severe reflux, too, and so she sat on the sofa doing gravity feeds every three hours, day and night. Andy sometimes found her drifting off to sleep, with milk spilt all over her. While getting a pump helped, this was a really stressful and isolating time.

Their friends did come and visit initially, but soon Ruth found herself left in her ‘own little space trying to deal with each day’. In the first year back at home, they had 10 admissions to the emergency ward at the hospital, and 60 outpatient appointments – more than one per week! Ruth thinks this was part of how she learned to deal with feeding on the go – having so many trips to the hospital meant that pretty soon she needed to feed Luke while they were out, and so she got used to it.

As is very common, Ruth experienced a couple of ‘sticky situations’ while out and about, and realised how little other parents know about tube-feeding – she needed to tell people several times that the tube was supposed to stay in the whole time, but was only kept in place by the face tape. Ruth became creative with the tape and tube – see Tips and Tricks for practical details of what she and other parents did.

Because Ruth had herself had an NG tube, she knew how uncomfortable it can be, and thinks this helped her understand why Luke was so upset at times. As a nurse, although she could reinsert an NGT, she was reluctant to do so with her own son, who was her first child, and because he was distressed. Wanting to step back a bit from the ‘whole clinical thing’, she would travel to the hospital to have it reinserted. Her crunch moment came at three o’clock in the morning on a cold, rainy winter night. Rather than go out, she reinserted the tube herself, even though she was nervous because it was her own child. It worked fine and she was able to settle Luke back off to sleep very quickly. After that, she routinely reinserted the tube when Luke pulled it out, and she lost all that anxiety about doing it herself. Andy was reluctant to learn how to reinsert the tube, leaving her to do it and to comfort Luke afterwards.

Luke was their first born, and Ruth and Andy thought it was really important for him to socialise with other children. Wanting to send him to daycare, they called lots of places until one said they were happy to take him provided Ruth came in and taught them how to do the tube feeds. Ruth went in for mealtimes for the first two weeks, showing the staff how to use the pump, giving them her own step-by-step instructions for backup, and reminding them to call her if the tube came out. One of the staff in particular became quite good at the tube-feeding in the end.

Ruth and Andy opted for a home weaning program, supported by a dietitian. She thought this was brilliant because she could work around her home life, but touch base with a professional if she needed to. The dietitian would ask lots of questions and help to notice if something needed addressing, in which case the family would come back in to the clinic.

Straight away we had to stop breast feeding and switch to a bottle. It was a struggle with her weight gain, so we added more calories to her formula. But this really thick food was making feeding really tiring for Rosalyn.

She was about seven weeks old by this point. I knew she wasn’t getting enough through the bottle, and knew a tube was an option, so I mentioned it to the dietician. I was looking forward to knowing she would be able to get the volume of food she needed, and felt it would take the pressure off me a bit. Her swallow was still unsafe, and the bottle was stressful for her, and for me. We went back to hospital to have the NG tube put in. They showed how to feed using the tube while we were there. It seemed pretty easy.

But, going home with a child who is tube fed changes everything!

What seems easy in hospital is completely different at home. All the practicalities of sterilising syringes, worrying about how quickly to feed. We did gravity feeds, which meant 45 minutes with me sitting there holding the tube. I learned I had to slow it right down to stop her vomiting. Because I only thought it would be a couple of weeks (I’ll come back to that!) I didn’t really think about a pump.

We were still bottle feeding, and using the tube to top-up to make sure Rosalyn got all the nutrition she needed. But, we had to continue with life, including with Rosalyn’s elder sister, Fran. It got to the point, if I had to go out, I wouldn’t do the tube feed and would make it up for later. It was really hard to do tube feeds out of the house – finding a space, having enough free hands.

It was a tough time for Fran, too. Because of Covid-19 she wasn’t able to come and visit me and Rosalyn in hospital when she was born, and understandably, she found that the tube feeding was taking a lot of my time, time she wanted to spend with me.

The tube feeding was also a big disruption at night. I would need to wake up, prep everything, do the bottle feed, do the gravity feed for 45 minutes, then resettle her, and try to get back to sleep, by which point it was almost time to start again! She vomited the tube out a few times, which meant another trip to hospital to get it put back in.

Fortunately the Children’s Hospital linked us up with a hospital closer to home, but still it was another thing to worry about, another thing to deal with. So while the tube solved the problem of Rosalyn’s weight gain, it did make other things harder. After a few weeks, some of Rosalyn’s care team suggested weaning her off the tube. This was actually quite scary, because she still needed the tube for her weight gains. And we just had another barium swallow that didn’t show much improvement. I had assumed she would need to be much less dependent on the tube before we could even think about a tube wean. But, my paediatrician was pro weaning sooner rather than later, and explained that a bit of a dip in her weight, and no gains for a couple of months would be okay.

It would have been good to have known all that earlier! I’d expected the tube to be there for just two weeks, and when that time passed, I realised it was going to be longer, but had no idea how long, or how we would know when the time was right for a wean.

The wean has gone okay. We started when she was about fifteen weeks old, so seven weeks after the NG was first put in. She didn’t actually lose any weight. Now we have stopped weighing her daily (that was really frustrating and didn’t make much sense to us), we feel confident with things. It is really important that our feeding team has been checking in with us throughout the wean, and I have numbers I can call if something happens. That makes it all a lot less scary.

Looking back, I realise there’s a whole load of questions and issues that came up that weren’t covered when we were in hospital learning about the tube. Like why it is there, how it works, what happens if they get fed too much or not enough, what happens when they vomit.

We were never told her mucus might increase – which would have been good to know! The biggest thing that was missing for me was having a plan for when to wean. Even if you can’t know exactly how long you’ll need the tube, it would be good to know how you will decide, what to expect, what the wean will involve.

So I’d say to everyone: ask your doctors about a tube exit plan as soon as you can! I found it really helpful to link up with other families of children who feed using tubes on facebook. I didn’t really feel I related to discussions about breastfeeding and bottle feeding. It was questions about tape irritation, re-taping, tubes coming out: that’s what helped me. The doctors and nurses can be brilliant, but they haven’t lived through caring for a child with a feeding tube, so that connection with people who have is really important.

Now, Rosalyn is doing well, the wean is going okay. The nights are better – 30 minutes for a bottle feed is better than 2 hours with all the faff of the tube feeding! We can get out and about more easily without worrying about missing feeds. It’s been a tough journey, but we are getting there as a family, and with the support of our feeding team.

Tube Weaning – it all started on a beach…

Ella was 16 months old. We were on the beach, Ella with the feeding pump, and a family came up to us and said, “Oh your baby’s tube fed. Well our niece was tube fed and she’s just done a rapid tube wean at the Royal Children’s in Melbourne and they got her off her feeding tube.” We’re like, “please tell us more!”

I rang the Mother and found out she’d done a net-coaching rapid tube wean with the Graz Children’s Hospital Austria, supported by the Royal Children’s Hospital Melbourne.

Then we did our research and connected with other families who had used this approach

It felt legitimate and safe because RCH Melbourne had been involved. But I wanted to be sure. I read articles and made phone calls. Family stories on the Graz website were really important, as was the opinion of a Dietician whom I really trusted and felt knew and trusted Ella. We also connected with another family who had actually travelled to Graz for their rapid tube-wean.

We made our decision

We did the “BRAN” test, which we had also learnt from another parent: What are the Benefits, Risks, Alternatives and N is for “No thank-you”. We knew our child and our instincts were that Ella could eat orally, but she was not hungry and had so many negative experiences around food and tubes and equipment around her mouth that she was not motivated to eat or even too scared to eat.

Then we had to get our Paediatrician and wider healthcare team on board.

I really had to sell the idea to Ella’s Paediatrician and thankfully he engaged. We connected with the hospital Paediatric Child Psychiatrist, and she knew the lead consultant involved at RCH Melbourne and made contact. It was on! But we still had to get the wider feeding team on board. Now we had two consultants – her Paediatrician and the Child Psychiatrist supporting us and the connected care nursing team. This support was critical and paved the way with the rest of the feeding team (Speech Pathologist and Occupational Therapist) who were concerned because of Ella’s lack of recent feeding skills. With the Consultant endorsement they got on board and started making preparations for Ella’s tube wean.

The rapid tube-wean

We started the wean following the feed reduction schedule from the Graz team and with Ella’s Paediatrician’s oversight. We had daily play picnics with three other families, including the one from Brisbane who had been to Graz themselves. Seeing the quick progress made by one 6-month old in our group really helped keep us going.

A key milestone and a set back

By day 7 of her tube-wean, Ella had her last tube-related vomit! She then got tonsillitis and croup but our GP was connected in and supported us with medical review and antibiotics and we kept going.

It seemed slow going

We were sending daily videos and updates to Graz, Austria. The Professor was always very positive and confident. We felt progress was so slow and things felt very hard. They could see, “She’s close! You see what she’s not doing. We see what she is doing”. They were noticing subtleties that I now realise are massive milestones for a child regaining interest in food. Ella was losing weight as expected, but the messages from Graz and our local team’s support gave us confidence to keep going.

Day 17 – Ella started eating!

We were brainstorming after one play picnic with the multidisciplinary team and the complex care nurse said, “She loves the bath, try feeding in the bath”. We tried later that day and Ella ate some puree off her Dad’s fingers!

Feeling hunger and the psychology of it all was so important

Ella had to feel hungry and make the connection that food was the solution to that hunger. We had to make food and eating not stressful and fun and follow her cues, her pace and her timing.

When we transitioned out of feeding Ella in the bath we initially had a bucket of water on the dining table. We’d play with the water in the bucket when she was eating with little toy food plates and a pink teapot. After a few days we no longer needed to do this. Ella was happily eating puree off a spoon with no distractions.

Three months later – Ella was tube-feeding free and our focus shifted to improving her eating skills

We did the intensive rapid tube weaning program over about three weeks and then she was away! Within three months our fully tube feeding dependent child was completely orally fed.

Since Ella’s rapid tube wean it has still been a lot of work to get Ella to eat age appropriately. We were thankful to have found a very experienced Speech Pathologist who helped enormously with teaching Ella to chew and grind food with a variety of textures. Now we can go out and order food for Ella straight off any menu. To see her enjoy food and mealtimes just like any other child brings us the greatest joy. Tube weaning truly transformed Ella’s and our whole family’s lives.

What advice would I have for other parents?

– Do the BRAN test – what are the benefits, what are the risks, what are the alternatives and what happens if I say no? Other experienced families can be a great resource too for getting answers to your questions.

– Discuss the risks of tube-feeding dependency and oral aversion with your medical team.

– Before the feeding tube is placed you also need a weaning plan with timeframes discussed with you. Tube weaning needs to be a priority goal right at the very start for all involved.

– Be prepared to advocate for the aspects of eating, mealtimes and family life that your child is missing out on and the significant negative impacts of that.

– Scary as it is, consider hunger as a positive thing, even if it might mean some temporary weight loss. In Ella’s case, hunger was really important to her tube wean success and after being feeding tube dependent for so long it took her many days to actually feel hungry.

– The psychology of it all is also really important and making food fun and developing positive associations with mealtimes.

– Trust your instincts about your child and trust yourself. Be your child’s voice and get the people in your care team to back your child and follow the extensive peer-reviewed research on tube feeding dependency and tube weaning. We have shown even a long term fully tube feeding dependent child with very limited oral skills can be successful tube weaned.

Our son Henry was born in January in 2014. At 2 days old, Henry became very unwell and was treated in hospital for suspected sepsis for a week. The day after we arrived home, they phoned to tell us Henry had flagged the new born screening (heel prick) test for a metabolic disorder. Follow up testing confirmed the diagnosis of a very rare metabolic disorder called LCHAD Deficiency.

We were taught that Henry would have to feed regularly with a strictly low fat diet. If he fasted, his body would try and utilise fat for energy but, because of a missing enzyme, he would spiral into metabolic crisis.

This is what had happened on his second day of life. We were lucky. He had nearly died. During infancy, Henry had an NG tube placed to help manage his metabolic condition and avoid hospitalisation. He was a restless and unsettled baby and would often vomit his feeds. Henry attended feeding therapy from 6 weeks of age, when he saw a Speech Pathologist at our local hospital. He then saw an Occupational Therapist and attended many sessions of Sensory Oral Sequencing. Henry was referred to a Feeding Clinic, where eventually we were told they couldn’t see him as he was too severe in his refusal to eat.

He struggled with the NG tube and taping, and we saw a slide in his weight gain, development and feed tolerance. Eventually at 11 months, after many hospitalisations, had a mic key button feeding tube surgically placed. Henry received bolus formula feeds during the day, and a continuous feed at night. His development sky rocketed with the regular feeds and he was a much happier baby.

Henry refused to eat until he was 2.5, when he suddenly began drinking his formula from a baby bottle. Shortly after, he was diagnosed with Autism Spectrum Disorder (ASD) and we worked hard with ASD specialists to support him with his sensory aversions.

During this time, I found out I was pregnant and antenatal testing confirmed that our daughter Rosalie would also have LCHAD Deficiency. Rosie was born at 33 weeks of age and was placed in the NICU where she was tube fed. Luckily due to my NG tube feeding experience, I was allowed to bring her home from hospital 5 weeks later, with the NG tube in place.

Rosie struggled with her feeds, though to a lesser extent than Henry. She tolerated most feeds but would vomit often, so had a mic key placed when she was 10 months old.

Unfortunately a complication with the wound meant Rosie had to undergo an NJ tube placement which remained in place for 5 weeks while her G tube site healed. The pain and trauma of the complications further exacerbated her feeding difficulties and to this day, at age 3, Rosie remains 100% tube dependent.

Around age 4, Henry was diagnosed with Eosinophilic Esophagitis (EoE), which causes pain and difficulties swallowing. A key moment came during one hospitalisation, when his metabolic team and dieticians worked with the allergy and immunology team, as well as the gastroenterology team.

Henry needed to stop drinking his formula – it was cow’s milk protein based, and it was quickly identified as the EoE trigger. However, neither of the specialised metabolic formulas available in Australia was appropriate, so we had to create a modular feed recipe that we could make up ourselves. I was given a bunch of scripts for ingredients, and began blending his feed daily at home.

This made a huge difference, by removing the EoE trigger, Henry became more comfortable. Two months later was for the first time biting and eating food. To this day at age 5 and a half years old, he still relies on a mostly modular feed diet, but he takes is lunchbox to school and eats a couple of bites with his peers every day.

One thing we learned quickly from our feeding specialists, was to make food fun. It was one of the hardest things to do as a parent, as I so desperately wanted them to eat. However, we persisted with a positive and slow approach to food. Today, even though the kids aren’t able to eat much, they love to taste food and love to sit with us for meals. They love making food, baking, and talking about flavours. Formula is their main diet, but food is a big part of their lifestyle.

Having two children with complex feeding difficulties was very difficult. It was a struggle each day, balancing feeds and fasting times with children who would often vomit but needed the formula to manage their metabolic disorder. We weren’t able to go out much and missed many ‘normal’ experiences that I felt families around us had.

In 2016, I met another local family with a tube fed child. We decided to make a local facebook support group called ‘Macarthur Tube Feeding Families’ (MTFF). The group has grown to over 70 families of loved ones with feeding tubes. We are an inclusive, judgement free group that exist to provide a platform of support and knowledge to other families. All of us at MTFF tube feed for different reasons, but essentially its for the same requirement – it helps our loved ones to survive.

Our son Ethan was born prematurely, and left hospital at 5 months corrected age, with an NG. This definitely took a lot of adjusting to! In the first two weeks, we ended up in hospital four times to get the tube reinserted. After that, I asked the night nursing coordinator to show me how to insert it myself. I taught my husband, and after that we did it ourselves: no more long drives to hospital every time the tube came out!

Reinserting the tube ourselves had obvious benefits, but it wasn’t easy on us emotionally. Seeing Ethan’s distress every time the tube was put back in took its toll on us too. We overcame this by telling ourselves that this was better for him than strangers doing it, and before long we were getting it in properly first time, when often in hospital it takes a few tries.

Of course, ideally, you want to stop the tube coming out in the first place. So, our attention became focused on not letting his tube catch on things.

We also had to figure out some things on our own, like how to read cues that he was full. In the early days, it was easy to overfeed him by accident, even when we stuck to the prescribed feeding amounts. The tube feeds much faster than sucking, so we had to work out how to slow it down.

And like all kids, sometimes Ethan got a cold, and this put a spanner in the works. Mucus would get stuck in the tube and he would gag and vomit.

We didn’t want tube-feeding to get in the way of Ethan enjoying meals and joining us at mealtimes. We wanted to give him as much practice as he could get, so that when the tube came out, oral feeding wouldn’t be so tricky for him. We kept breastfeeding, which was largely comfort feeding for him, because most of his nutrition came through the tube. However, this helped him get the idea that sucking led to a full belly. He would also sit with us when we were eating snacks or desserts, and we would let him try if he wanted. We helped him learn to suck and get liquid in a controlled way by using hospital swabs when he as thirsty.

A lot of the ‘tube-feeding hacks’ that ended up useful to us were about reducing frustration for Ethan in relation to feeding and drinking. We found cups that made sucking less hard, and which meant he could drink regardless of the position the cup was in. This reduced disruption to his play. (We found ARK cups and BBox cups worked well for us).

We made tube-feeding less intense for him by putting blankets and rugs on the floor so he could play while eating. We gave all medicines at other times so Ethan didn’t associate feeding with these less pleasant experiences.

We deliberately praised and rewarded every bite he took, however small, and were ready to offer lots of different things until we found things Ethan liked.

We realised that success, and keeping things enjoyable for him, meant being ready to change, rather than sticking to a rigid regime. Be prepared to keep trying different things until you find something that works.

We hit the jackpot when Ethan wanted to try my yoghurt. We were sat together watching TV. After that we slowly tried other soft fruits. We realised that Ethan liked to be in control of what went into his mouth – he hated being spoon-fed. So we used home-made pouches, which he could suck himself, and small chunks of fruit and veg. Initially this was topped up with tube feeds, but he was soon taking something orally every meal time.

Some of the memorable moments for us were when he first started to suck feed from a cup. And of course the huge day when he ate a ‘full meal’.

Nathan was my first child. The pregnancy was all fine, but things went pear-shaped at his birth. The umbilical cord got pinched like when you bend a hose. There was no oxygen getting through to him. They rushed us to surgery for an emergency c-section.

The lack of oxygen caused significant and lasting brain damage. Nathan didn’t sit, crawl, hold his head up, talk or really respond. All that was gone. All his movement, changing positions, we he had to do manually for him.

Nathan could not feed himself or regulate his swallowing, so he was tube-fed right from the start. While I never got to breast-feed him, I did express, and so he was fed my milk.

Nathan had many seizures, all around his brain. That’s why they couldn’t do a partial lobotomy – because his whole brain was affected. He was on medication his whole life to help make them less severe.

We had a great team supporting us

I consider myself lucky in many ways. One was the paediatrician who was called in when he was born. I could take Nathan in and he would always find a way to see him. He would explain things really carefully to me, and would never let me leave his offices without knowing I understood what he was trying to explain. He let me ask questions. He supported me trying things, like going to see a particular therapist. When I got pregnant with my third child, he asked if he could be there for her birth too, even though we hadn’t seen him formally for a while by then. We had a real connection.

The staff at the hospital really got to know me. They weren’t just looking after Nathan, but looking out for me as well. A nurse effectively banned me from the kids’ ward for a day. I’d been there nonstop. I needed a break. She was right!

Another way they were amazing was when I had my second child. They arranged for his medical review to be when I was in hospital and did all his medication checks and kept him in for a week. They took such good care of both of us.

Feeding Nathan – the NG Tube

Like with other kids fed through an NG tube, we had to check that it was in his stomach. Sometimes Nathan’s seizures could pull the tube up and it could end up in his lungs. We had a big scare one time when a radiologist tried a barium swallow and the barium ended up all on his lungs; that was another time our Paediatrician was amazing – he helped save Nathan that day.

I never felt comfortable learning to insert the tube myself. Everything else I was confident with. But putting the tube in worried me so much. Nathan was in hospital every couple of weeks with a chest infection or something, so I figured that’s one job I don’t need to put my hand up to do. It also meant that I had more opportunities to check other things with Nathan were okay.

With Nathan’s feeding, because he would not cry or show any hunger signs, we fed him according to a schedule. This set amount at this time on the clock.

Because the tube was long, I’d tuck it up under a headband because I didn’t like the tape on his face. It caused irritations. So I got Nathan different coloured headbands to go with his little suits. That worked because he didn’t pull at it. That was my way of getting round and it made it look cooler and strangers didn’t mind it so much.

We had to use the particular formula which wasn’t readily available back them. The chemist where I lived knew us and Nathan, and got the company to provide it for a reasonable price.

Feeding Nathan – using a machine

One problem was, his stomach really shrank. It didn’t need the space to hold whole meals. Nathan started throwing up, no matter how slowly we did the feed. We ended up attaching the tube to a machine, which would release the food at whatever time we set up. We ended up drip-feeding him over a 24 hour period, 15 or 10 millilitres an hour. He was on the machine constantly. We had to take him off to go to any appointments – so he’d miss out on food then. But otherwise, he was on the machine.

Feeding Nathan – using a button / PEG

But after a couple of months, it was getting worse again. He was aspirating again. So they suggested the button (a PEG). That made it much easier. I didn’t like him being hooked up to the machine all day. It was so restrictive on what we could do. I wanted to move him around the house, to change the light, and sounds. We don’t know what he could actually see and hear, but we did know he wasn’t blind and deaf. The machine made moving him round harder.

Nathan never touched or pulled at his button. I was lucky, I never had any problems or infections. His aspirating lessened a lot. We were still feeding according to the schedule. But now I didn’t need to check the litmus paper every time.

We had to educate people at the hospital and be assertive at times

Lots of people weren’t used to handling a child like Nathan. For example, we had to make sure they knew they had to check before every feed that the tube was in his stomach (when he was still on the NG).

We had to tell them he doesn’t move himself, you have to roll him. Or for tummy time, we’d use a towel rolled up and put it under his arms, but you couldn’t ever leave him unsupervised on his tummy. I used to take in a tea tree pillow (they were all the rage back then) – they’re good because if a baby gets their face caught, they’re not going to suffocate. I would take that with Nathan to hospital, because the nurses can’t just sit there the whole time.

We had an amazing Paediatric Neurologist come on board. Nathan’s medications were pretty complicated by then, and I was very adamant that no-one else was allowed to adjust his medications.

An on-call Paediatrician one time didn’t like that. He was talking about changing Nathan’s medications, and I butted in and said ‘That’s my son and I’m his voice. Not even his Paediatrician touches his medications. Only the Paediatric Neurologist’. He wasn’t too impressed.

There was one doctor. I didn’t like the way we spoke to me, but more importantly, I didn’t like the way he spoke about Nathan. So he was out. We never saw him again.

We understood Nathan our way, and found ways to enrich his experiences

I have lots of photos of Nathan, my beautiful boy. On some of them I say he’s smiling. Strictly, the medical explanation is that it was due to his seizures. But I’m his mum and I took it as a smile.

I’m pretty sure he wasn’t deaf because he always turned to the door when his dad would come home in the evening, and that was when the M.A.S.H. theme would come on. I take that as a response. I’m sure he deliberately kicked his sister in the head because she was crawling all over him and he couldn’t get away. So I’m sure there was something going on. That’s how I look at it. That’s how I remember it.

Although he was always tube-fed, we did try to give him some stimulation with things like flavours on my finger. We used a little long cotton-bud thing with a spongy thing on the end. I’d try and wipe his tongue down. I don’t know what he could feel, but I hope he got some sensory enjoyment from having different things on his tongue – flavours and consistencies.

Nathan passed away

I went into my living room at home when Nathan was scheduled for his feed and saw something was wrong. He’d come back from hospital the day before. We got him back up to the hospital. That paediatrician who I wouldn’t let change Nathan’s medications was there. He’d actually rung his office and gotten all his appointments cancelled so he did not leave Nathan alone from the morning when we got him there until he passed away after lunch. He was there with him.

It took time to come to terms with things

I did blame myself for a long time. About what happened at the birth. It look me a long time to come to terms with things. The same was for when Nathan died. I kept asking myself, what if I’d gone in five minutes earlier, not waited until the time he was scheduled for his feed? That took a long time to get my head around. But then again, it could have happened the day before when he was in hospital, or the next week. It wasn’t down to me watching the clock waiting to come and see him.

We have happy memories of Nathan

Even though my second-born was only eight months old when Nathan died, she says she can remember him. I’ve always talked about him, we’ve got photos, and both my girls always knew of him.

There are sad times. There are days I cry. I prefer to think on the good people I met and the experiences that I had with him, like when he – I saw him kicking his sister in the head. That’s how I choose to remember him, doing what big brothers do.

David spent five weeks in ICU post-birth, where the nurses established a routine of changing his nappy and clothes. This enabled Kati to get involved by trying to breastfeed. She initially stayed with David, then travelled in from home three times a day to breastfeed, because of needing to care for Andrew.

Breastfeeding was difficult because of David’s size and birth weight at 1.8kg, which was small for 35 weeks premmie, so most feeds were via. NG tube. The NCIU nursing team organised tube-feeding training for Kati so they could take him home once his weight was consistent. Kati received a handbook and was ‘signed off’ by the nurses as competent to do the NG feeds herself. However, the training did not include tube reinsertion, so if David pulled the tube out, they would have to go back to the children’s ward or ED to have it re-inserted.

Like Roberta (see Staying positive), Kati thought the feeding issues would be short term. However, David ended up having surgery several times, and it became very hard to know how much he was getting. David became a master at pulling his NG tube out, meaning their family became regulars at the nearby hospital. Eventually, Kati took the training to re-insert the tube, and this made a big difference. It reduced inconvenience, worry, emotional stress on the whole family, fear of losing friends, and social isolation from curtailed social activities because David was always sick.

Kati brought Andrew in to see David when he was in the ICU when she could, where she was able to explain the feeding process and get him involved right from the start. She used many strategies like those described by Juan, Gina and Fei-Fei in the Tips and Tricks

When David was 12 months, doctors suggested a stomach PEG, which was confronting for Kati because it meant the feeding issue was long-term thing – it wasn’t going to get sorted in a few more weeks. She went with the PEG and doesn’t regret it for a second – David’s facial skin is less irritated, and he’s been less unwell. She’s more confident and comfortable going out with David now.

Like many of the parents we spoke to, Kati has lots of pictures of her son with the NG tube in, as well as a few from those rare moments when it wasn’t there. She imagines that sharing the tube-in photos with him will be an important way to remind him he needs to look after himself because of his heart condition. These pictures are not just reflecting his journey, but a resource to help him live in the future.

After Jenn was born, Cory received excellent emotional and practical support from the nurses involved. He told them when he was coming in to feed each time, which meant they slowly taught him how to feed Jenn, check her medications, the tube positioning, aspiration and taping, in preparation for when they went home. Unlike Kati, Cory did not receive a handbook, and he was not officially ‘signed off’ as having been trained how to tube-feed.

Jenn is now 4 months old and starting to become mobile, which means she is able to get her finger into the space between the cheek and nose and pull the tube. Cory is taping the tube, yet he has found the tape does not stick well, attributing this to Jenn’s oily skin (just like Hayley’s daughter Ellie, see Tips & Tricks). As with Berry, Christina and so many others, Cory has learned from experience which tape is best, how to tape and how often to change it – he waits until it starts to curl up at the edges, just like Roberta does. Cory was not taught how to re-insert the tube. He attributes this to being the kind of person who just potters along and learns when he needs to.

To include her in Jenn’s story and to help her learn about her new sister, Cory brings Whitney along to the hospital whenever they go to get the tube re-inserted. Whitney talks of going to the hospital like a familiar part of their lives that she is part of and understands. Like Kati and so many other parents, he takes lots of photos of Jenn with the tube, even though some in her family prefer pictures with the tube out.

She also required CPAP treatment (breathing assistance – Continuous Positive Airway Pressure) for obstructive sleep apnoea, which meant she was still delicate upon discharge after six weeks in the Neonatal Intensive Care Unit.

They ‘hibernated’ for a while, because of the extra risks that getting flue would have meant for Tori (it was winter) and although they think they might have been a bit too cautious, Siân is happy with how they played it (see Getting the balance right).

They didn’t dwell or fixate on the tube, because although feeding Tori was important, so was keeping life normal for their older daughter Alice. They figured out ways to feed on the go (see Tips and Tricks for their solutions and those that other families came up with!). Like with pretty much all parents of tube-fed children, taping was a big thing, and they ended up changing it ‘when it’s disgusting’, or patching it up to extend its life (see the taping section in Tips and Tricks).

With a speech therapist and nutritionist they developed an action plan to get Tori bottle feeding, with the goal of her eating orally before 10 months (which is the optimum age for surgery). Because of her soft cleft this involved feeding her very small amounts on a bottle with a pigeon teat, although Siân ‘never really got the hang of it’. The plan did not work exactly as hoped, but when Tori was about four months they noticed her watching the family eat, so they let her join in, then weaned her onto purées and really soft finger foods. Their strategy was, ‘right, let’s try this. If she can handle this, then that means we can move to this food group’. Siân feels that it was led by Tori and her interest, not by them or a particular plan. Jonny explained that as a family they’ve always been ‘big foodies’, trying new things, and this was something that Alice, and Tori, would get to follow along with.

Siân found a Pierre Robin online group while she was still pregnant, and still gets in touch with them, sharing progress stories and pictures of their children. For Siân this is something different from what you’re given in hospital – not a factsheet, but real people sharing real life stories, getting glimpses into the future [Exactly what we are trying to do with this website!]. This online group encouraged Siân to take photographs of Tori’s development, including with tube in (there’s more about photos as a way to stay positive in Tips and Tricks).

Jonny and Siân had some pretty full on experiences while feeding away from home, including a totally inappropriate comment from a passer-by, and a challenging incident on a plane – see more about these situations and how they dealt with them in ‘feeding on the go’ in the Tips and Tricks section. Siân found the idea of reinserting the NG tube ‘really traumatic’ and never learned to do that, but that didn’t stop them ‘finding that balance between normal life and the life you have with an NG baby’.