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"Aerodynamically, the bumblebee should not be able to fly.
But, the bumblebee does not know that so it goes on flying anyway."
~Mary Kay Ash

Both hospice and palliative care systems are programs of huge benefit to the lives of our families as a whole unit. Hospice services should be an early consideration when our children begin to show signs of decline or struggle, or even all throughout their lifetime from a palliative care team. These specially trained individuals will guide us through the process of preparing to let our children go comfortably and peacefully by sharing in family memory-making moments, remembrance items such as castings or prints, photography, and provide that emotional and spiritual support that is of such benefit throughout life as it is at death.

Because of the terminal prognosis hydranencephaly carries, many of our families are initially offered the option of or simply sent home from the hospital with hospice care for their child. While the concept is a frightening one, it does not always mean “final days” and should not be looked at as a period of “doom and gloom”. Instead, hospice workers help to spiritually, socially, emotionally, and physically support a family that is possibly facing the final 6 months of life here on earth for a loved one. Hospice is not a place, but instead a concept of care which includes comfort and support when treatments are no longer receiving a proactive response. These care providers are not working to prolong life or to hasten death, but are instead trained in specialized methods of comfort care for the patient and their family as a unit.

Pain medications, care support, spiritual support, before and after death bereavement and counseling services, and other comfort measures are common. Generally in this stage, hospice is not allowed if measures are still being taken to prolong life, such as further surgeries. Oftentimes our families have been discontinued from hospice care after electing to have proactive treatment or surgeries, such as a shunt placement, or when the child has exceeded the limits of hospice services by displaying greater health than anticipated.

Palliative care is similar support for individuals and families but it is considered more of a long-term assistance, with further treatments for the condition encouraged and supported. Quality of life is the focus of palliative care and is compiled of a core team of doctors, nurses, social work palliative care specialists, massage therapists, pharmacists, nutritionists, chaplains, and others who work to alleviate the associated symptoms of a primary diagnosis. This care team will spend as much time as necessary with the child and their family to work in supporting them through control of symptoms, understanding complex treatment options and goals, navigation of health care services, as well as emotional and spiritual support.

Many families find it helpful to make these sorts of decisions ahead of time: when they would want to start using hospice, what measures they would take if faced with the decision to fight or let go, and to what extremes care should be taken. Of course, these critical life decisions are hard to make rationally in the moment they are facing a family head-on. In these cases, living wills can be drawn up stating exactly what you want done if your child should become very ill or reach the final stages of life. Many hospitals will discuss resuscitation options with families from the early stages of terminal diagnosis as well. Do Not Resuscitate (DNR) papers which state that in the event your child should stop breathing, or that their heart were to stop, that you do not want them resuscitated. In that event, the doctors will respect your decision and refrain from performing procedures to prolong life. Keep in mind that you do not legally have to sign these papers unless your family understands the details and chooses to do so. Keep in mind that these orders can be revoked at any time, in writing to be included in your child’s records and top of mind of the care staff.

These are all difficult things to think about, especially in association with your child. Just as critical to plan as you would their life when you are faced with the possibility of a shortened one, these services work to ensure a better transition for all involved. Just as any other individual on the planet, our children also deserve to be given a chance at the quality of life they deserve from beginning to end… full of dignity, peace, and love.

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