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 showed no interest to being breastfed 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 now placed in to her abdomen, at feeding times, we would have to fully undress her (even if we were out in public) in order to get to her feeding MIC-KEY button.
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 conscious of her tube and clothing situation.
Although she can not speak but she has her own way of showing how she feels and how she understands things. She became more and more agitated from clothing seams. Scratching her skin aggressively and would give us an unsatisfactory look when we tried to undress her at feeding times when we were out in public.
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 nice, colourful, tube friendly yet functional clothing that provided her with full dignity and sensory comfort was proving to be a difficult task. We could not find much out there!
The clothing situation as a whole 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 journeys 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® was introduced.
All our items are sensory friendly using high quality soft to feel cotton, 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 simple yet so discreet you would not even tell the difference. This allows tubie kids to be kids in their own right and express their own personalities through colours and designs without having to compromise comfort, dignity or functionality when it comes to clothing.
All our signature items come as integrated 2in1’s. An integrated bodysuit and tshirt in one for tube fed children who are still in nappies. In addition to an integrated undervest and tshirt in one for tube fed children who are toilet trained. This means that although they look like a one item garment but they are actually 2 items which means you will not need a separate undergarment.
The items not only have been designed with the children in mind but to also make the parents and carers roles much easier. At feeding times all you need to do is lift up the tshirt layer to access PEG Tubes or attach Gtube button extensions easily via the hole that is placed in the undervest or bodysuit. The undervest and bodysuits cover the child’s body giving them the dignity they need at feeding times. Its as easy as 1, 2 and 3 with out having to fiddle around with more poppers and snaps!> See our collections