Caelen's Quest: Star PALS

27 September 2014

Star PALS

We have recently signed up with Star PALS - a paediatric palliative care service for children with life-threatening or life-limiting conditions. This decision came shortly after C's last discharge. I suppose the frequent hospitalisation and endless visits drained me out so much, making the idea of doctors, nurses and volunteers coming to our home a very welcoming one.

Star PALS was quick to respond to my application, made their first visit shortly after. The second visit followed closely, which was great! They brought along a volunteer, Auntie June, to interact, bond and build rapport with C. Medi Minders, a service provided by Star PALS, is made up of a group of medically trained volunteers who offer caregivers a few hours of respite for various reasons whether to run errands, take a breather or simply allowing caregivers to connect with friends and family whom they hardly have time for.

Nurse Serene and Volunteer June playing with C

Within a month of joining Star PALS, they have already made 3 visits, with the most recent one joined by doctor to help solve C's bowels issue. C had tears and would bleed every time passing motion and unfortunately developed a phobia. With doctor's advice, medication and monitoring, I actually had greater peace of mind and was more confident in coping with his issues. This was something I really appreciate because it meant reduced (unnecessary) trips to the doctor (usually the only option for C is to visit the A&E) over minor issues. I could always consult the team for advice with follow-ups at home.

The best choice I have made so far =)

Now hoping to look into home therapies for C as well!

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Beginning of his Journey

Caelen was diagnosed with Type 1 Spinal Muscular Atrophy (SMA) on 13 Jan 2014, at age 10 months.

SMA is caused by a missing or abnormal (mutated) gene known as survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein in the body called survival motor neuron (SMN) protein. In a person with mutated genes, this protein is absent or significantly decreased, and causes severe problems for motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibres to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, nerve cells may shrink and eventually die without this protein, resulting in muscle weakness.

The hallmark feature of SMA Type I is that children are unable to sit or stand without help. They will require equipment such as strollers or wheelchairs for mobility. Swallowing and feeding will become difficult for children with this type of SMA and they will eventually lose the ability to swallow safely without aspirating. Children may eventually require a feeding tube to supplement their nutrition which permits the administration of liquid food into their stomachs.

Children with SMA Type 1 will also experience weakness of the muscles used for breathing, those that help expand the chest and fill the lungs with air. The chest is smaller than usual in these children and they begin to breathe using primarily their stomach muscles (belly breathing). The lungs do not fully develop due to this type of breathing, and coughing becomes very weak. It may be difficult for children to get enough air into their lungs while sleeping, and eventually throughout the day. Many of these children will require equipment to help them breathe; again this is based on what each family chooses. Weakness also leads to problems with the spine (scoliosis) and hips (displacement) that may lead to further loss of ability/function.

Source: Families of SMA