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Arabella has quadriplegic cerebral palsy, brain damage and limited vision and other complex issues. Dispite this she is a very happy little girl who loves her twin brother dearly. Her Physiotherapist from the child development centre Poole Hospital felt that a specialist sleep system would help her limbs align at night, and as she also has a hip problem the SupLine Stabilizer should stop this getting worse.

We have now been able to donate both the Supline Stabilizer & the specialist sleep system at a cost of £996.00. 

A huge thankyou to all our collectors , customers and volunteers at The National Children's Foundation.

 

Read more about Arabella below.  

Arabella and her twin brother William had an abrupt entrance into the world, by emergency caesarean section at twenty seven weeks gestation. They were both resuscitated and ventilated. William appeared to be the sickest initially. They both were transferred on separate occasions and returned from Southampton General Hospital to Poole.

Unfortunately when they were six weeks old Arabella decided to surpass all other problems she and her brother had and developed Necrosing Enterocollitis. She was rushed to Southampton General Hospital for emergency treatment and surgery. During the surgery, all but the least viable amount of intestine 30cm was removed. The liver also bled heavily (we believe they only just managed to stop the bleeding) which resulted in acute renal failure. . Sadly following a brain scan at this point, Arabella was found to have catastrophic brain damage as a result of the surgery, bleeding, renal failure and infection. We prepared ourselves for the worst. Remarkably again Arabella fought to live and has continued to do so to this day.

The following areas cover Arabella’s current requirements.

Arabella has the following medical conditions:

Nasal Gastric Feeding- Arabella requires part feeding using a NG tube and a feeding pump. The amount and frequency of feeding depends upon Arabella’s health, e.g. if she has a cold or cough, the amount of this changes and she requires additional NG tube feeding. This is generally between 1 to 4 feeds per day depending upon her state of health.

The NG tube requires 24 hour management and care in case of partial removal or complete dislodgement. There is also a high risk of aspiration if the tube is wrongly located or is partially removed.

Arabella is also able to swallow specific pureed foods and milk substitutes as she is lactose intolerant.  Her eating process has improved, but still takes considerably longer than a healthy child and she struggles to attempt to co-ordinate any kind or hand or arm movement whilst eating. Arabella also requires all orally ingested foods to be thickened, to a ‘blamonge’ type consistency; she is not able to swallow thin or liquid items without the risk of choking.

Arabella has reflux, which is controlled via large doses of Losec; however there have been a number of choking episodes many of which have required hospital attendance.

Brain damage- Due to Arabella’s previous medical issues after her birth and subsequent renal failure, she has suffered significant brain damage. This has been shown in a number of severely abnormal scans MRI, EEG and Arabella is under review due to the high risk of fitting.

This brain damage has severely impacted her in the following ways:

Mobility

Arabella finds it very difficult to move any of her limbs and has been diagnosed with four limb cerebral palsy. This condition affects her ability to move generally and she still only has limited core and head control. This is a significant disability and affects her everyday quality of life. Arabella receives regular physiotherapy at the Child Development Centre, a private physiotherapist and several sessions a day with her mother. Arabella’s mother is also provided with support and guidance in transfer and manual handling, Arabella’s cerebral palsy and other medical conditions have lead to her having weak core strength and she is at significant risk of hip dislocation. This is being monitored by orthopaedic surgeons; It is very likely in future Arabella will require surgical intervention to improve this issue however nothing is currently planned. Arabella uses a standing frame daily to improve her muscular control and improve the location of her hip joints.

Vision:

Arabella’s vision has also been significantly damaged by her brain injury. This has left her with only limited vision up to approximately 40-50 cm at the very most from her eyes; This however depends upon her state of health and other external factors (such as a noisy room or other disturbances) which may reduce her ability to process visual information. This can vary on a bad day from nearly nothing to a good day where she is able to interact with blocks on a tray. Arabella can differentiate yellow, red, black and white colours best and some close moving objects. Bella finds it difficult to listen and see at the same time which can be more of an issue for her, particularly in a noisy environment, if she becomes overloaded with stimuli, then she will require some time out where she ‘switches off’ for a period of recovery/rest. Arabella has  visits every two weeks from the visual teacher.

Development:

The significant brain injury has left Arabella with significant developmental delay and in most areas her level of development is approximately 6 – 9 months at best.

For movement and mobility related development this is much lower.

Speech and Communication-

Infrequently Arabella attempts to make speaking sounds or groans; this is normally around meal times or if she requires attention. However she is unable to speak and probably has only limited if any, comprehension of words spoken to her.

Arabella has undergone a number of communication  assessments, and uses a number of switch access, play and activating toys to interact with her environment. This works best in a one to one environment, rather than with a number of others as the increased external noise and other inputs can reduce Arabella’s ability to process information and interact.

Renal Conditions

Arabella is also under follow up at Southampton Hospital to monitor her renal function, following her acute renal failure. This has resulted in a reduction is kidney function, with a lower number of neferons than would be expected in a healthy child. Arabella also has a higher than normal Calcium/Creatinine ratio and further kidney tests are being arranged in order to assess her condition further..

Arabella has to date surpassed all of our expectations. She is a happy girl, who loves life,  particularly beaming with joy when she hears her brother  William.

What she needs

Her Physiotherapist from the child development centre Poole Hospital felt that a specialist sleep system would help her limbs align at night, and as she also has a hip problem the SupLine Stabilizer should stop this getting worse. We would also like to purchase some sensory equipment for Arabella, the total cost of this would be £2900

Please help us to help this beautiful little girl by donating now.

Thank you