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Dominic Edgecombe | A long road to diagnosis

Four year old Dominic Edgecombe’s favourite food is salmon. Raw or cooked he doesn’t mind.

For his Mum Karena watching her son enjoying his food is something she will never take for granted, as she knows first-hand the struggle they have been through to get to this point.

Right from when he was born Dominic struggled to put on weight. At just 2 days old he lost 500g and couldn’t put it back on, resulting in him staying in hospital for another week before he was allowed home. This was to be the first of many hospital stays for Dominic. Between 5 and 11 weeks old Dominic had 3 weeks in hospital as doctors tried to determine why he was having feeding issues and still struggling to gain weight. It was at this time it was discovered he had a dairy allergy. This wasn’t to be the answer to the problem though and Dominic later spent a whole month in Starship Hospital undergoing extensive testing, which revealed no real answers.

Stressful times

The uncertainty of not knowing what was happening with Dominic was incredibly stressful on his family. The worst was yet to come for them though. The medical team perceived Dominic’s lack of weight gain to be inorganic due to no obvious medical reason and CYFS became involved. This was humiliating for Karena, knowing she had done nothing wrong, and in fact was doing everything she could to help him grow and develop.

Over the next few years Dominic would go on to see a number of different Paediatricians all trying to ascertain what was causing his lack of growth and medical issues. 

It was during this time that True Colours became involved. Counsellor Mary Orpin became a lifeline for Karena supporting her through some of the toughest times when they were in hospital, this included advocacy with medical specialists. Mary continued to provide counselling support to Karena on a regular basis, both at hospital and True Colours. Phone support in times of crisis was also appreciated and made a significant difference to Karena during these stressful times.

Finally an answer

After years of no answers, there was finally a light at the end of the tunnel for Dominic. Following yet another stay in Waikato Hospital, he was referred to a dietician and they started questioning whether Dominic had Irritable Bowel Syndrome. The dietician began with removing fructose from his diet which made a huge difference, but it wasn’t the whole solution. They then decided to attempt a full FODMAP diet which eliminates a range of foods that may be poorly absorbed and subsequently fermented by bacteria in the digestive tract.

Since following this diet, as well as removing a couple of other ingredients, Dominic is a completely different little man. He has gone from being on the 3rd percentile for height and weight, to being closer to the 25th percentile for both. Today Dominic is growing normally despite his massive dietary restrictions. Wise beyond his years, he is a happy outgoing boy who has an understanding of his allergies that will blow you away.

New Challenges

After years of facing medical struggles with Dominic, Karena has taken on her own challenge this year. What started as a family weight loss contest for an upcoming family reunion quickly became so much more for Karena. She started to swim and under the guidance of a swim coach she progressed to a point where she decided to enter the 7.1km 5 Bridges Swim held in Hamilton in April. She chose to use the swim as a fundraiser for True Colours, to give back and show her appreciation for the support she received. The challenge saw Karena lose the equivalent of Dominic in weight, but it’s what she’s gained that means so much more. She has come out the other side fitter, mentally stronger and healthier. And now there’s no stopping her. She is back in the pool training for the swimming leg of the Taupo Half Ironman in December.


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