Feeding Finn: A mom’s inspiring story

Our eldest son, Finn, was born very premature at 26 weeks gestation. We had no warning he was coming early, which meant Finn received no antenatal steroids to prepare him for his premature arrival. Weighing in at a mere one kilogram, Finn’s lungs were not fully developed. During his second day in Neonatal Intensive Care Unit (NICU), a ventilator necessary to keep Finn alive tore a huge hole in his left lung causing his blood pressure to spike, resulting in a severe bleed on the brain.

Feeding Finn would be our most difficult challenge

Finn was a fighter and after a long 108 day NICU stay, we finally went home. After all the surgeries and months spent on ventilators, it never occurred to us that feeding Finn would be our most difficult challenge.  Finn had needed a feeding tube in NICU to assist with his feeds when he was too weak to finish his bottle, but this was temporary and by the time we went home he was feeding solely from a bottle. Within a month Finn’s reflux had become so severe he was not keeping anything down and not gaining any weight at all.

The decision was made to insert a feeding tube once again and so our fight to feed Finn began. The feeding tube only made the situation worse and over the months Finn stopped drinking from a bottle totally. The reflux was still causing him so much pain and when it was time to finally start solids, Finn would gag so severely he would actually stop breathing! Not one specialist in South Africa was able to help us and we were told that we would feed Finn through a tube in his stomach for the rest of his life.

Finn’s reflux became so severe he was not keeping anything down and not gaining any weight at all

As a mum it was heartbreaking to know that feeding your child, which should come so naturally, was causing our family so much stress and pain. I spent night after night on the Internet trying to find a solution until finally I found a clinic in Austria that could help us. NoTube had been teaching tube dependent kids how to eat for more than 20 years and had over a 90% success rate. We packed our bags and nearly sold our house to be there.

Finn had to experience hunger and understand what hunger meant

It was the hardest four weeks of our lives. Firstly we had to begin reducing Finn’s tube feeds so he could experience hunger and understand what hunger meant. This was extremely hard for us as Finn was already severely underweight. We were told that survival instinct would kick in and drive the child to eat taking over his mental ability to refuse food. We were also reminded that kids are very manipulative no matter how sick they were. Finn took almost a week with no food before he decided to put something in his mouth. The only sustenance he was given was glucose water while he slept.

While we were busy “starving” our child, we had to follow strict guidelines:

• There should be no emotion attached to food – We could not show anger, happiness or sadness when it came to food. Not even when Finn put food in his mouth for the first time.

• Food needed to become mundane – Finn had to learn that it is just something we eat to survive. If you needed to be emotional, we had to leave the room rather than let our express our feelings. You do not want your child to associate emotions with food.

• Do not try to feed your child – Allow your child autonomy. If they are hungry enough they will feed themselves and only then, if they allow you, can you assist them to finish their meal.

• There should be no offering of any food without a cue from your child – Finn is disabled but when hunger finally took over, he found a way to get the food in his mouth without our help.

• Surround your child with food – Remove his toys and replace them with food. Go out and experience food with your child. Take them to restaurants, give them money to buy food from a market or food stalls. Expose them to different food situations as much as possible.

• Create a comfortable setting for your child to eat – Sit at the table to eat a meal with the family. Make meals fun by having a tea party or a picnic. Serve small manageable portions. Place food on colourful plates or interesting containers.

• Do not wipe or clean your child while eating a meal – Do not even wipe runny noses unless demanded by the child. Do not disturb or interfere with your child while eating.

After four very emotional weeks we finally left the feeding clinic with Finn eating and drinking orally for the first time in more than a year. At times it has been very challenging but Finn is still eating like a champion five years later.

Finn is still eating like a champion five years later

When I started weaning Connor (my second child) onto solids, I assumed things would be so much easier as he didn’t have any disabilities and was 100% healthy.  How wrong could I be! Connor started spitting and gagging and was showing the signs of being a fussy eater. I reverted back to what I had learn with Finn and applied the same rules and within three days, Connor soon learnt that I was in charge and not him!

As a Mom, I found that many of the principals the clinic in Austria used on children with severe eating disorders could also be applied to children who are fussy eaters.

Through the years we also found a few more tips to support good eating habits:

1. Be Consistent

• Keep offering the same foods that the family eats everyday, a balanced nutritional meal. If the child does not want to eat certain foods don’t stop introducing it.
• Find alternative ways to cook the food or present it. If they don’t want a certain food rather leave it on their plate and tell them not to worry about it.
• Only allow them to remove the food from their plate if the child is in severe distress.
• Be supportive. The “despised” food will one day become familiar and they will surprise you by popping it in their mouths.

2. Do not offer an alternative

• If your child does not want to eat a meal you have provided, do not make something else that they will prefer to eat.
• If your child does not experience hunger they will not try something new.

If Finn could learn to eat and have a healthy appetite, then any fussy eater can learn to enjoy nutritionally balanced meals with their family.

To read Sheona’s blog on Feeding Fin, click here

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