This part of our website shares the stories of real families (we change everyone’s names to keep things confidential). Every history of a child with complex feeding difficulties is different, but every story is important.
We hope by sharing these you might find something reassuring – perhaps you can see light at the end of the tunnel by seeing how things turn out for other families.
The stories are written down here, and we have just finished filming them. We’re telling these stories using actors to protect the privacy of the families who shared them. We are uploading new videos regularly at the moment! Skip ahead to read the full stories
If you’d like to share your story with us, please get in touch.
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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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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.
David was born prematurely at 35 weeks. He had an NG tube from birth until 12 months of age and then changed to a PEG. He’s now a thriving, hungry young boy who has both PEG feeds and is practicing eating with his family!
David was diagnosed during pregnancy with a hole in his heart. Further testing revealed a narrowing in the heart valve and holes in the heart muscles. Understanding his heart condition (mixing of blue and red blood that would affect oxygen levels) before he was born and knowing he would need surgery to repair the hole in his heart gave the family time to prepare. But the premature birth was ‘a very big surprise’ and they did not fully understand the feeding implications.
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 the NGT.
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 section.
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.
Jenn had an NG tube inserted at birth, and was diagnosed with Noonan’s syndrome, which means her feeding difficulties will be long term.
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.
Tori was diagnosed at 20 weeks in utero with Pierre Robin Sequence and micrognathia (a small jaw). She received an NGT at birth, because she was born with a unilateral soft cleft palate that interfered with suction, which meant she was unable to attach to a breast or a bottle. 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’.
Luke was born prematurely – at 30 weeks – with an extremely low birth weight. He also had an injury to his bowel (called Nectrozing Enterocolitis), obstruction in his small bowel, chronic kidney disease, and a global developmental delay. Luke’s NGT was inserted at birth and remained in place until he was 2 years old. Ruth and Luke were in hospital for the first five months of his life.
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.