Feeding Tube Awareness Week: Tom's Story
It is Feeding Tube Awareness Week. The mission of Awareness Week is to promote the positive benefits of feeding tubes as life-saving medical interventions. The week also serves to educate the broader public about the medical reasons that children and adults are tube fed, the challenges that families face, and day-to-day life with tube feeding. Feeding Tube Awareness Week connects families, by showing how many other families are going through similar things and making people feel less alone. So without further ado, I'd like to introduce you to a family I've been working with.
This is the story of Tom, written by his mother, Natalie.
"Tom has 1P36 Deletion Syndrome. This causes a variety of challenges, however, for Tom, it means he has a developmental delay, non-verbal communication, hearing and vision impairments, kyphosis, mild heart condition and more. He also has significant Hypotonia (low tone), gut motility issues, severe silent reflux, extremely sensitive and complex gut issues and difficulties co-ordinating sucking with swallowing. Tom was born full term with low Apgar results after a stressful vaginal birth. From day 1, his sucked too weakly and had issues coordinating his sucking with swallowing (not that I knew this yet). The hospital identified he had some hearing loss. I was very concerned about his feeding difficulties (I was using a syringe to feed Tom my expressed breast milk). However, the Midwife in the hospital told me I was an “over-anxious mother and he was fine". After 5 days, we were sent home with a “healthy” baby.
For 3 weeks, we struggled together with feeding. Tom continued to seem vague and unable to suck and swallow efficiently. Even though he never vomited or showed typical signs of reflux, I was treating him like a reflux baby (elevated mattress, holding upright for 20 minutes after a feed, etc) because he seemed to be uncomfortable. I was convinced something was very wrong.
At 3 weeks of age, I was feeding Tom at night. I was holding him up to settle his stomach after a feed when he went still. When I pulled him forward, he had vomited up frothy milk. And then he went still. Tom had aspirated the milk into his lungs, his lungs collapsed and he stopped breathing. With the help of the ambulance over the phone, my husband resuscitated Tom. His little heart stopped for 12 minutes before he came back to us. My breast milk disappeared within 24 hours while we Baptised our baby in the Paediatric Intensive Care Unit and hoped this was not the end of his journey.
The next 4 years saw Tom in and out of the hospital with repeated viral and aspiration pneumonia. He was oxygen dependent, diagnosed with chronic lung disease and Bronchiectasis and we were told he was unlikely to live a long life.
Because of the high risk of aspiration, Tom was unable to continue to feed orally. A nasogastric tube was put down his nose, into his bowel, and he was drip fed. While he has never tested positive for Milk Protein Allergy, Tom has only ever been able to digest formula such as Elecare (Fully Elemental). I believe that just like so many other areas of Tom’s body, his little gut was delayed also. So sensitive to anything that was put inside and still learning to work the way other people’s guts do.
At about age 4, we found that Tom’s stomach was much stronger and he seemed to be able to digest the formula into his stomach. Tom received a fundoplication and a gastrostomy (Mic-Key) button. This was life changing for Tom. He was no longer attached to a feeding machine 23 hours a day. His ability to eat was still a challenge and he remained nil by mouth except for little sips of water. He showed no interest in wanting to learn to eat orally either. He was now generally well and getting stronger. Our hospital visits had decreased and it seemed that lungs were repairing themselves.
As Tom got older, I knew that the Elecare formula was no longer providing enough nutrition for him. He was hungry, his upper airways were often wet and I felt this was the formula and probably a food sensitivity. I knew that in his own non-verbal way of communicating, he was telling me he couldn’t go on living on formula and his gut was tired. We tried various other higher calorie specialised formulas, but even though he had no allergies, he could not digest any of these and it would cause severe gut pain that would make him pass out. My fear was that if he ever stopped tolerating the Elecare, our next step was Total Parenteral Nutrition feeding. I knew I had to do something and that we had to give Tom the opportunity to digest real food.
I met with his Paediatrician and gastroenterologist who both supported me and said there was no reason we could not try “real food blends” with Tom. However, it was clearly explained that many children cannot tolerate real foods. I met with hospital dieticians to find the support and guidance I needed. However, while I was told they could “support his growth and direct on nutrition requirements, but they were unable to assist in the actual introduction of real food blends as it was against hospital policy”.
I felt quite lost and desperate as I needed guidance. When your child has such significant and complex feeding issues, you feel you are failing them. I couldn’t introduce real food without the right professional support. I was terrified of hurting him again.
Then, Tom’s physio told me about a Nutritionist called Brittany Darling. While we are in Brisbane and she was based in Sydney, we could have Skype meetings.
Brittany was a breath of fresh air. Professional, confident, warm and intelligent. While she had no previous experience in Tube Feeding, she understood Tom’s gut sensitivities and that we had to go back to the start. We had to go slowly. Under Brittany’s direction, we slowly started to introduce real foods.
Our tools were:
A vitamix blender
Enfit reusable eternal syringes
Halyard bolus feeding connector tube
Home Blended Formula Handbook by Dunn Klein and Evans Morris
Blending the food to a smooth consistency means you have to add liquid which can decrease calories and also foods need to be cooked well. Brittany helped me with successful ways to retain calories, add calories and retain the goodness in the foods, while ensuring they are all cooked in a way that will successfully go through the tube easily. She also educated me on things to watch out for including food intolerances.
Tom loves to be part of making his meals. He gets so much joy from watching the foods go into the blender and then helping to start the blender. He loves the vibration and giggles! While he is not eating orally, we have found a way to involve him in his meals and I think this will lead to increased interest in oral enjoyment of food one day.
At 9 years of age, Tom had his real first food into his stomach. We continued with formula but we also replaced his morning tea and afternoon teach with homemade organic broth. While this was going straight into Tom’s stomach through is feeding button, it was as if he came alive. His happiness at having something different in his gut was evident on his face and in his squeal. He signed “thank you”. I still get a lump in my throat thinking about that moment.
We then introduced foods one by one and trialled these over a week-long period. Carrots, sweet potato, swede/turnip, pumpkin, pear/apple, rice water. Just as if he was a baby starting solids. He tolerated everything! So we moved forward and added in chicken, fish, salmon, tuna, turkey, pork, lamb, kidney beans, chickpeas, lentils, brown rice, quinoa, chia seeds, oats. And he went really well. The next test was nuts, yoghurt, avocado. I was worried about the yoghurt as he had never tolerated the formulas with milk proteins. However, he went well and has shown no side effects.
Over a period of 6 months, Brittany helped us to move Tom onto a full real food blend diet. She assisted with quantities and dietary requirements. He eats a varied real food blend diet and is probably eating the healthiest diet in the house these days! We will always keep formula as a part of his diet because I know that things can change and it’s important to have a safe place to fall if we need one.
Tom has thrived and gone from strength to strength. When his Paediatrician saw him for the first time since we introduced real food blends, he could not believe the change. His alertness, his colour, and his chunky thighs! The biggest thing I have noticed is that Tom’s cognitive development has fast-tracked since the introduction of real food.
His interest in tasting foods, licking and touching has increased since the introduction of real foods. We will soon do another scope to see how his gut looks and we hope the reflux ulcers in his oesophagus will have settled down also. This year we are doing a lot more Feeding Therapy with a Speech Therapy with Tom. I believe he will continue to want to try more foods orally and we will support him to do this at his own pace.
I desperately hope this story doesn’t make any other parents disheartened or sad. Not all children can tolerate real foods and it took us 9 years to get there. It is difficult as every child is so different and when they are medically very fragile and/or complex, the formula is a life-line.
What I do hope, is that the introduction of real food blends to tube fed people will become an easier option for families. It is very time consuming to prepare and can be stressful in the early days. I am lucky to have a supportive husband to help. We need more research and support services and I would love to see a provider of packaged real food blends here in Australia one day! There is a fabulous opportunity for someone out there and I am excited about the future of food blends.
Thank you, Brittany. You helped to improve a little boys life. And helped me let go of some of that early mother's guilt. Thank you :)