Tubie Kids® Brand Story

In 2010 we were blessed with our second child, a beautiful baby girl who was born with a very rare genetic syndrome called “Duplication 22q12q13” making her number 7 in the world with that condition.

Our daughter Karma, is 9 years old now. As part of her condition, she suffers from chronic respiratory, gastro and sensory processing issues. She is non verbal, has severe cognitive and physical delayment in addition to being tube fed.

Going back to when she was born she had no interest at all in breast feeding and as we tried to bottle feed her orally, we were blissfully unaware at the time that we were actually drowning her lungs with her baby milk (known as silent aspiration)!

She started coming down with what looked like a normal common cold. Then out of the blue, she started getting milk pouring out of her little tiny nose! It was then all the alarms starting ringing and we realised something was seriously seriously wrong.

This is when we discovered that she had an unsafe swallow in addition to severe gastroesophageal reflux which meant that her stomach contents were going back up in to her lungs. Her issue was happening from both ends, orally and internally.

By the age of 3 months old, her upper right lung collapsed as a result of aspiration pneumonia. She became a little baby covered in all sorts of medical tubes, requiring feeds via a nasal gastric tube along side oxygen therapy to help her breathe.

After spending months on end at Great Ormond Street Hospital in London undergoing treatments and investigations, she was finally diagnosed at 8 months old and had to be put on an emergency surgery list to have a feeding tube button surgically placed in to her abdomen (to solve the poor swallow issue long term) in addition to an irreversible Nissen Fundoplication (to solve her severe reflux condition). That was the only option to save her lungs and life! This was and still is her lifeline.

As her feeding tube was surgically placed in to her abdomen, at feeding times, we would have to undress her (even if we were out in public) in order to get to her feeding port.

Our solution at the time was to cut holes in her clothing to access her feeding button or thread the feeding tube through clothing popper openings which sometimes used to cause occlusions in her tube. This worked for a while until she started getting older and became more aware of her tube and clothing situation.

She became more and more agitated from clothing seams and would scratch her skin aggressively indicating that she was in discomfort. Her nappy was all over the place and her standard clothes were damaged from the holes we had to cut.

As children get older they become more conscious and like to look and feel the same as other children. Colours and style is also a way of saying who they are without having to speak. Being and feeling included is a huge confidence boost to their own well being.

Finding a choice in nice, colourful, well made tube friendly yet functional clothing was proving to be a difficult task. We could not find a lot of choice out there!

The clothing situation was not ideal especially when "out and about". Let alone from a dignity point of view.

As parents realising this was a huge issue for us and other families alike we strongly felt that if we can improve and make a difference (however big or small) in our children's tube feeding journey's then our mission is all worth it.

After months of hard work, genuine fuelled passion, encouragement and support from our close family members, we scrapped whatever pennies we had together to make it happen and Tubie Kids® brand was introduced.

All our items are sensory friendly using high quality soft to feel fabric, flat seams and no inner clothing labels. These extra comfort features have been added with the intention to ease stress and anxiety some children with sensory processing disorders may face.

The adaptations in our designs are intricate yet so discreet you would not even tell that they are adapted once they are on.

Our brand champions inclusion and promotes children who have additional needs to be kids in their own right . For them to express their own personalities through colours and designs without having to compromise on choice, comfort, dignity and functionality when it comes to everyday clothing.

Our clothing line not only have been designed with the children in mind but to also make the parents and carers roles a lot easier, making a difference to families just like ours.

We hope you like them as much as we do!

Zayne xx

 

 

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