In 2010 we were blessed with a beautiful and very special baby girl called "Karma" who was born with very complex respiratory and gastro medical issues making her number 7 in the world with her unique genetic condition called "Duplication 22q12q13".
At first, our gut feeling was saying something is not right. She wanted to sleep 24/7, hardly cried and was not really interested to feed. I tried breast feeding, bottle feeding, yet still she was not keen.
We took her to the baby clinic and the GP said she seems fine and dismissed our initial concerns saying she did not need a further referral.
In despair, we contacted Great Ormond Street Hospital in London and booked a private appointment to see the Gastro team. As parents, we could not just sit there and do nothing. Something was definitely not right!
She was 3 months old when we went to see the gastro consultant at GOSH. The consultant immediately took one look at her and said she did seem to have mild dysmorphic features and would need to undergo various tests to identify the issues.
After that first visit, GOSH contacted our GP and asked them for an immediate referral as they shared our same concerns.
A month later, she became very poorly. We rushed her to our local hospital. Her oxygen saturation's were low, her breathing was heavy. X-rays confirmed aspiration pneumonia. Our baby girl was aspirating due to dysphagia (swallowing problems) in addition to suffering from severe reflux. This caused her upper right lung to collapse.
Little did we know at the time that the tiniest things we would normally take for granted in life such as eating orally and swallowing saliva was actually life threatening for her. This was a scary new world we were entering!
From then, she required naso-gastric tube feeds and required 24/7 portable oxygen therapy.
It was DAUNTING! We had to bottle our feelings and crack on with it. Our baby was fragile and needed our strength to help her.
After spending months on end between GOSH and our local hospital undergoing treatments and investigations, she was finally diagnosed. Her syndrome is extremely rare and there is not much information to go by.
At 8 months old, her condition got worse. GOSH put her on an emergency surgery list explaining that if they don’t operate asap her lungs will not be able to go on. After 5 days of being on the list, she was operated on.
The procedure entailed a Nissen Fundoplication and fitting a G-tube button at the same time. We still remember to this day the surgeon telling us that they usually don't like doing a big Nissen op on a tiny baby but we really had no other option as her lungs needed to be saved.
Her problem was being caused by poor swallow (including aspirating on her own saliva) and severe GERD. It was a problem caused by both ends.
We literally spent the first year of her life in hospital. It was surreal! We celebrated her first birthday at Great Ormond Street Hospital and got discharged a few days after.
We can not thank the nurses and consultants enough. We will forever be grateful. The Nissen's and gtube really saved her life!
6 months after surgery, her lungs started to get stronger and we managed to wean her off the oxygen.
She does suffer from low immune system and winter months can get pretty rough and isolating as we can become house bound at times. She is 11 years old now, however physically looks no bigger than a 5 year old weighing 15kg’s and 98 cm in height.
She is non verbal but has her own way of showing what she wants. At 5 years old she became more mobile and at 6 years of age she started eating blended puree food orally (though we have to trigger her swallow by giving her a dummy after each spoonful or else she would not swallow it).
All her fluids still go though her tube. She also requires a lot of venting and free drainage during the day to alleviate her tummy pain caused from excessive gasses. She will always have to depend on her tube for fluids and venting. Our little girl is a fighter and we have learnt more from her than she from us.
It can be a very lonely place as a special needs parent. Its very difficult to find someone to babysit for respite. I think family members and people see the tube feeding scary but really it isn't.
My first advice to all new tubie parents is to get referred to a disability social worker.
Disability social workers come out to do assessments to help with allocating families with direct payments so you can employ personal care assistants. This helps provide you as a family with respite and your child having access to community visits and assistance with care needs.
This is vital as it allows you to focus on yourself and other siblings that may feel a bit left out because you need to give your other child more care and support.
Secondly, I recommend joining tube feeding support groups/pages on social media. Its always nice to be able to have a chat, rant, advice and support from other tubie parents going through a similar journey.
Finding a supportive network is key! Remember you are not alone. There are many families going through a similar journey. When Karma got her feeding tube, we didn't know anyone! It was a very lonely, isolating and scary place to be in.
Tubie Kids FB page offer advice, support, tube feeding facts and hacks to help new parents who are just about to start or just started their tube feeding journey. We feel its important to be able to find a supportive community and help others not feel alone.
Last but not least, you can not pour from an empty cup! You need to focus on your own well being too! Easy said than done...but its true.
Your Journey might be scary at first but you will be surprised at how inspiring this journey can get!
We have met amazing and inspirational families along the way and you will too.