A dying child: A nurses perspective, and what motherhood has taught me

I had worked for a few years as a paediatric nurse prior to having my own children.  In my work, I care for some very sick children, and some, unfortunately, do not make it through.  Before

having children of my own, I thought the loss of a child was a very sad event, tragic and unfair.  It was not until I had my own children that I could even begin to understand the magnitude of what losing a child really meant from a parents perspective.  I can only imagine now, by thinking about how I would feel if I lost one of my own, how it may feel.

I imagine having the essence of my soul ripped out through my mouth.

I imagine having my beating heart ripped from my chest

I imagine a void in my stomach that nothing could ever fill.

I imagine a lead weight inside of me, knotting my gut.

I imagine my brain being so consumed with grief that nothing else could penetrate.

I imagine a grief beyond recovery.

I imagine wanting to howl in pain and withdraw from the world at the same moment.

It was not until I had my own children, that I knew how very much a part of your own soul and very being that your own children are to you.  I realised, that the loss of a child to a parent is not just the loss of a child, it is a loss of part of yourself that nothing could ever replace.  Becoming a mother changed the way I care for these families, and I feel that I needed to have my own children, to find that real empathy and understanding to care for grieving families.  I am in no way saying that I am the best person to get grieving families through their loss, I am just stating how becoming a mother has taught me things that no text book, research article or grief and palliative care education course ever could.

What to tell a dying child

Children have a mature understanding of death at around the age of 7, that is to say, they understand the 3 important components of death as permanence (once a living creature dies, it cannot be brought back to life), universality (all living things eventually die) and nonfunctionality (all living functions, including thought, movement and vital signs, cease at death).  However, children’s experiences with death and dying are powerful influences on their understanding.  A terminally ill child under the age of 6 may have a very well developed conception of death.

Should we tell a child that he or she is dying?  Well, the research articles all say yes.  Authors of these articles believe that providing children with the opportunity to talk about death may lead them to worry less.  Open and honest discussions with children contribute to their cognitive appreciation of the concept and their emotional well being.  Children that are not told the truth will often make up their own magical answers, that may sometimes be more scary than the truth.

How do you tell a child that he or she is dying?  I don’t know the exact words.  These conversations are almost always done in private.  One thing I do know is that kids know more than we realise.  I have seen parents attempt to protect their children from death, by refusing to allow the child to be told that he or she is dying.  In my experience, I have learnt that a child will always know that he or she is dying, even if they don’t let on to the parents.  They know their own bodies and know when something is not right.  I have found that children who are denied open conversations about death, are also denied answers to their questions and usually become inwardly fearful of what is about to happen.  It is important that children are told the truth about death and dying, otherwise they fill in the blanks and draw their own conclusions, and their conclusions are usually scarier than the reality.

An example of this: I was on a night shift a few years ago, caring for a 9 year old with a very rare terminal blood disease.  Her parents did not want her being told that she was dying.  At around 4am, she was awake, worrying, and said to me “I feel like I am dying, maybe if I eat something I will be OK”.  She tried to force down an apple, as she had rightly equated food with life.  She knew that she was dying, even though no-one had told her.  Because she was denied discussions about death, she didn’t completely understand why she felt like she was dying and was afraid, yet she felt like she still had to try to fix it herself.  It was heart wrenching, not being able to talk openly to her about it in her hour of need.  She died that morning, only a few hours later.

Parents may find it very difficult to discuss the topic with their child, as telling their child will mean admitting to themselves that thier childs life is not going to be as long as they had expected.  Once you admit this to yourself, it means that you have to then deal with it, and who wants to have to deal with that.  Voicing the issue may also create a feeling of giving up, and hope lost, and we all like to hope for a miracle.

Younger children tend to grieve for their parents and worry about them feeling sad when the child dies.  Children that are openly told by their parents that “yes mummy and daddy will be very sad, and miss you very much, but we will be OK” will cope much better with this thought than those who can’t express their fears.  Adding a comment such as “Mummy and daddy will get to see you again one day” or “you will get to see grandma again soon” may be helpful, depending on your own personal beliefs about spiritual matter.  Teenagers grieve more for the life they will not have- marriage, children, career.  Opportunities also need to be made for terminally ill teenagers to discuss their fears.   

How can you possibly let a child go?

Before I became a mum myself, I would see children suffering, with no hope of a cure, and I could not understand how these parents could do everything to keep their children alive, even if it meant prolonging their suffering and the inevitable.  Well now I can begin to understand.  How could I let one of my own children go?  Its unfathomable.  You just couldn’t make that decision to give up on your own.  Now that  have my own children, I can see that these parents of dying children need a very gentle guidance to come to that conclusion themselves.  I have seen the relief, in both children and parents, when active treatment ends and palliative care begins, and the focus becomes of the child’s comfort and quality of life.  Modern medicine is amazing, but just because we can, doesn’t mean we should.

 

Why do children get sick and die?

Its difficult to comprehend why a child can be allowed to suffer in illness and how a life so young can be taken.  This is the moment when people start to question their faith and beliefs.  I don’t think anyone can give an answer to this question, but I do hold a belief that may make it easier to cope with.  One thing I have noticed, is that all the terminally ill children I have cared for have had beautiful spirits and were so rich in personality.  They seem to be old souls, wise beyond their years.  Their life’s lessons are condensed into such a short space of time, but they still manage to teach and touch more people than most adults can who live to a ripe old age.  I believe these children are angels, sent for a special purpose.  Somehow they can give and receive more love than most of us will ever know.  And isn’t that what life is about- love?

Men and women grieve differently

One thing I have learnt, is that all families will struggle through their ocean of grief in their own way.  Some families are torn apart, some are brought together.  Mothers feel their loss strongly.  How can your carry a baby for 9 months, give birth, bond with him, nurture him and raise your child as you would expect, and not feel completely empty when that is taken away.  Women, however, tend to be more social creatures and usually deal with grief more effectively than men for this reason.  Fathers have their own very special bond with their child and grieve deeply, but often do not have the social ability to express and release this grief.  Its human nature, evolutionary, and dates back to hunter gatherer times. As a result, men tend to turn to activities that may numb their grief. Negative activities may include alcohol or working excessively.  Other fathers may put all their grief into starting an awareness website or fundraising committee.   Both mum and dad need to be supported in their grief, but as both parents are so consumed in their own grief, it is difficult for them to support each other.  This is where it is vital for the health of the relationship for both parents to find their own supports outside of their relationship (such as friends, family, counselors, psychologists).  Grief cannot be avoided.  You may delay it, but it will always come back (usually at special life milestones) until you deal with it.

Losing friendships

Unfortunately, some families will lose friends at this time.  Grief is uncomfortable to be around, and some people just don’t know what to say, or how to act and will avoid the situation all together.  It is such a shame that, at a time when the support of friends is needed the most, it may be the time when friends start drifting away.  Many of the families I have worked with noted that their supports faded after around 3 months, as if people expected that 3 months was enough time to get over it.  We all need to remember that the loss of a child is something you never get over, and true friendship needs to continue way beyond this time limit.  The grieving parent needs to be the one to guide the conversation.  There will be times when they don’t want to talk about their loss (no-one wants to fall apart in the middle of a shopping centre) and there will be times when the full extent of emotions will need to be expressed.  When talking to grieving parents, I find it helpful to ask how things are going, but not push the topic and make a quick analysis of where to go from there.  You also don’t want the parent to feel as though the child has been forgotten or ignored.

Don’t forget the siblings

Grieving starts from the moment of diagnosis of a potential terminal illness.  Parents will obviously, and not surprisingly struggle with the news that their child is going to die.  The focus moves to the child who is ill.  But we need to remember that brothers and sisters are going through this grieving process too, also at a time when the parents are usually emotionally unable to be the 100% support for the other children, due to their own grief.  It’s not their fault.  There is only so much you can expect of one person emotionally.  This is where supports are vital.  Siblings may require counseling throughout the course of the illness, and after the death of their brother or sister.  Friends and family come in helpful with explaining things to and listening to the siblings.  There are excellent mental health professionals that specialize in childrens grief to assist in getting the siblings through this rough time.  Art therapy can be a fantastic outlet for emotions in a child, without them having to articulate in words what they are feeling.

My final note:

To those families who have suffered the loss of a child:  I am deeply sorry for your loss and I would never assume to imagine what your own personal experience has been like and the pain you have endured.

To those families caring for a dying child: I hope you use all the supports available to you at this time. Know that your child is an angel, here on this earth perhaps for only a very short time, but with a very great purpose.

To those families with healthy children: be ever so thankful for what you have.  Life is precious, appreciate your children for the miracles they really are.  Care for them and let them grow.

To those people who know a grieving family: be a support, offer your friendship and be available to listen when needed. 

~I do not assume to know what it truly feels like to lose a child, I only write this as an observer and carer of grieving families, in the hope of encouraging more support for these families.  The content of this article is focused on terminal illness of a child, such as cancer or degenerative medical conditions and the finer details of grief will differ for those parents who have suffered the loss of a child as a result of accident or injury.