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Child Complex Care

Routes Healthcare was recently approached by one of their Care Commissioning Groups to provide end of life care to a newborn baby. Due to complications during labour Joe was unfortunately born with brain damage. Routes received the referral when Joe was only 2½ weeks old and ready to leave hospital. The care package was to provide end of life care, seven nights a week. Joe’s parents needed some respite throughout the night, although they still wanted to provide care and comfort as and when required.

The Routes Care Co-ordinator hand-picked a small, dedicated team, of carers who are experienced and trained in complex paediatric care. Routes also selected a team on their ability to fit in well with the family unit and provide much needed emotional support for Joe’s parents.

Due to the nature of his condition, Joe requires oxygen 24hrs a day. He suffers from Dystonia, a neurological condition that can cause muscle spasms and contractions. Joe is unable to feed normally and is fed via a Jejunal tube, a method of feeding where a feeding tube is passed through the nose into the oesophagus into the stomach, through the pylorus and into the jejunum.

It has now been six months since we first started caring for Joe and although the future is still unknown, we are constantly tailoring the care package to cover his growing needs and his parents’ wishes. This includes all of the normal developmental stimulation a baby requires, such as reading to him and sensory stimulation, as well as the clinical tasks including:

  • Administering continual oxygen
  • Chest physiotherapy
  • Administering controlled medication
  • Jejunal tube feeding
  • Nasal and oral suctioning to remove secretions

As well as the initial seven nights a week care package, Routes Healthcare now provide additional care for 4hrs, one day a week to accompany Joe’s mother to take him to hydrotherapy classes which help aid his mobility. When required our carers also accompany Joe and his family to the local hospice where they stay with him to provide constant one-to-one supervision.

Since Routes have been helping care for Joe’s, his family are full of praise for the healthcare team they have in place. Having initially thought Joe would only be with them for a matter of weeks, at 6 months old Joe is a happy baby who brings joy to all of those around him.

The care package Routes provide has allowed Joe and his mum and dad to enjoy family life as best as they can, as well as allowing Joe’s mum and dad some much needed rest during the evenings. Routes have also recently accompanied the family on a short break away with their friends and family. Knowing that his carers were on hand to help care for baby Joe enabled his parents to relax and enjoy this much needed respite break.

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