A different kettle of fish!

09/08/2020

Chloe joined our family through adoption at the age of 18 months. We were already parents to her two full siblings and our birth son but welcomed her gladly.

Like her two older sisters, we knew that Chloe had a mitochondrial mutation called Mitochondrial Encephalopathy Lactic Acidosis and Stroke Like Episodes (MELAS) and was likely to have some degree of learning difficulties. However, both the older girls are stable - medically speaking - and their underlying issues have little impact on daily life beyond the ‘normal’ issues of caring for children with significant learning issues.
 
I've worked around and with disability for many years, as has my husband, although he works with the elderly, so, we thought we knew what we were doing. With hindsight looking back - we just laugh! Chloe was out to show us that she is a different kettle of fish! She was born significantly premature with several issues. Her neuro consultant says that when she was born, he scheduled several MRI and EEG tests (in his words) ‘expecting the brain to light up like a Christmas tree!’ as she presented so severely. Imagine his surprise when her scans showed a lovely healthy brain! (Chloe’s talent is confounding tests.)
 
When we first met her, she had no ability to sit independently and was often laid flat in a baby bouncer for hours because it was the only way she kept any feed down at all. Although 18 months old, she was fed on thickened liquids and first weaning foods but would still vomit numerous times a day. Because we had experience of additional needs with our older children as well as professionally, we recognised quickly that this went far beyond the normal reflux issues.
 
We were seen soon after raising our concerns and she had the usual range of swallow tests. They showed a disorganised swallow and the worst case of GORD (Gastro-oesophageal reflux disease) that the specialist had seen in a 40-year career!

Chloe commenced gastrostomy feeds but over the next six months it became apparent that this wasn't a viable option. She still vomited continuously and seemed in intense pain. She was needing doses of Oramorph daily just to allow feeds and our usually very smiley baby was utterly miserable. We were booked in for the appropriate operation to help Chloe. We ended up in hospital for four and a half months as - although she tolerated the operation well - she was producing huge amounts of wind, which was getting trapped in her stomach and causing intense pain and she still wasn’t tolerating feeds.
 
To cut a long story short we then trialled a GJ (gastro-jejunal) tube and managed six months of jej feeds with 24/7 gastric drainage. She still could not move independently and had little hair. She was the size of an average nine-month-old baby. Her feeding trials showed a child who screamed in agony when feed was given, even at five millilitres an hour so the decision was made to put her on Total Parenteral Nutrition (TPN).
 
Within the first day of being on TPN we were able to cut out all her pain medication. We went through the training to bring her home and came out of hospital the day before Christmas Eve. Having her home on TPN was difficult at first. However, we could see the difference it made to Chloe. By June the following year she had a full head of hair for the first time; she had nearly doubled in weight and was making huge strides in her physical development. Her condition continues to develop and we have had to add a range of IV medications to her routine including anti-convulsants due to epilepsy but she is now nearly eight years old and is walking independently and is a beautiful and very cheeky young lady.
 
Chloe is non-verbal and has severe learning difficulties as well as sensory processing disorder and this has proven a trial at times in terms of keeping her line safe. She removes her gastrostomy frequently and has pulled her central line out! We have had to be inventive in the way we dress her line (she also has extremely sensitive skin) to prevent pulling and her last two lines have been placed exiting her back.
 
What I never fully appreciated was how exhausting it can be to provide 24/7 nursing care. I thought I had some understanding having had my other three who all have varying degrees of disability but adding in IV drugs and TPN is on another level entirely. Throw in a child who barely sleeps and is a risk to herself and it becomes nigh on impossible.
 
Thanks to her amazing team at Leeds we finally (after three years) managed to get more care for Chloe which at least means we can sleep. Prior to this we were taking it in turns to stay with her at night to prevent her removing her line.
 
We love our children and are proud and privileged to provide the level of care we do but we are also human. If I had been told anything to help at the start of this journey it would have been that not only is it okay to ask for support but that we shouldn't need to beg when we do.

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