Friday, July 03, 2015

the death deal

all of us die. death is the only thing 100% guaranteed for us mortals.
i deal with death and tend to dying patients everyday as part of my job.
paediatric patients.
children. babies. newborns.
it isnt easy.
but as difficult as it is for me, it is more difficult for the parents and families of these children.

the expected "normal" life cycle for us start within our mothers' womb. we are born as somebody's son/daughter, and then we grow and become adults, as our parents grow older and see us becoming parents ourselves, and they get to be grandparents. and when the time comes, our parents die and leave us to continue the cycle.

but when the child dies before the parents, the life cycle gets disrupted. it creates a huge black hole in the parents' lives. there is not even a specific term designated for these parents whose children died before they do. unlike "orphans", "widows" or "widowers".
although life can and will continue on for most of these parents and families, for some of them the major event disrupts their life cycle so significantly that it just goes spiraling down from there.

i dont have children of my own.
i did have 3 pregnancies.
i had a ruptured ectopic last year that almost took my life, and i didnt even know i was pregnant at that time.the closest i had to almost feeling like an expectant mother was for the 2 weeks after finding out i was pregnant before the 2 miscarriages i had, most recently about 6 weeks ago.
even then i was quite emotionally affected, so i can only imagine how it is for the other mothers out there who carried their babies for 9 months, or have already held their babies in their arms, breastfeed them, watch them grow, worry for them, play with them, scold them, love them.. and then to watch their babies & children die.

i see and talk to these mothers and fathers before and after their child's death. and that's how i know how difficult it is. i try my best to help them get though it. there is nothing i can do to bring the children back, but i try and help the parents get back on track. not by making them forget. i actually help them to remember. many dont want to be reminded. it is normal to be sad. but you should hold on to the lovely memories of your child as a way to move on. you can never forget. those who think or say they can, have merely put aside the memories of their dead child in a tightly sealed vault inside their memory bank and sooner or later the vault will explode open, and that's when you get problems.

i'm not just talking about depression, anxiety, anger management issues, alcoholism or substance abuse. these things can happen to any of us who have lost our loved ones, not just parents who lost their children.
but when it comes to parents who have lost a child .. the explosion of the bottled up feelings (that vault i mentioned earlier) can happen when the mother gets pregnant with another child and may cause problems in that pregnancy. or soon after the new baby is born ie post-partum depression/anxiety. it's one thing not being able to stand hearing about other people getting a new baby or even the sights and sounds of other people's children laughing and playing.. but what about their own children. losing one child does not mean you are no longer a parent. many of these parents still have other living children.. neglect, if not actual physical abuse, may occur to their other children, often without the parents realizing it.

even though i have been dealing with death and dying children everyday as part of my job, it doesnt get any easier. it doesnt make me "immune" or "numb" as some people may think ("emie mesti dah tak heran tengok budak2 sakit ye..dah biasa tgk budak2 sakit ye.."). some of these parents initially say to me too " doktor tak paham, doktor apa tau.."
i would be a heartless superhuman if all that was true. or the opposite. a non-human.
in paediatric palliative care, even though we know that there is no more cure for their disease, that their lifespan is now made shorter, that they are dying, and we make sure that the parents understand this, our goal is to try and make these children live as much as they can for the time that they have with us. as my palliative team and i tend to these dying children and their families, we get to know them and become close to them too. and even if it's true, that when the children die, we may not be as badly affected as the parents themselves, there's no denying that we are still affected. for the brief time that we had with them, they became our children. at least that is how i feel. but i know most of the medical staff in my team feel the same. we have debriefing sessions for ourselves from time to time to help us deal with the sadness and emotional pressure. because we also need to remember. we also cant forget.



why i am a 25 year old doctor. or at least look like one. at least to the eyes of my darling patient.

this was a conversation on whatsapp between a patient of mine and a staff nurse on my palliative team. the patient's nickname is "baby" and she is 10 years old with  congenital heart disease. initially when she was referred to us, she was so shy and i had a real hard time getting her to talk to me. her condition was slowly deteriorating, and her mom revealed to me that baby was becoming very moody and was often angry towards her mom and her older sisters. in order to get her to talk to me and gain her trust, i asked baby to come up with any questions that she may have for me. they can be about anything. i promised that i will answer all her questions or will at least try and find the answers for her. when i saw her 2 days later, she had written 6 questions for me, 3 of which were actually about her mood swings and whether they were related to her heart disease. i was happy that i managed to get straight to what had concerned her mother and  me, and i addressed the questions and explained to her the best way i could. according to her mom when we followed up on her recently, baby's mood has been much better at home now, and i'd like to think that our little q&a session helped her with that, even if a bit. 
as for the other 3 questions, well surprisingly, they were all about me.
she asked what my full name is, whether i am married, and my age. when i told her my age, she didnt believe me, stating that i look younger, and i laughed (happily, of course! i know i know.. she's only 10, what does she know about how 40 year-olds are supposed to look like, but hey.. i'm taking it in. or rather-sucking it in. get it? haha). anyway, that was more than a month ago, and at the time it was only she, her mom and myself during that meeting because she was too shy to even let my nurse in. but the nurse continued to visit her everyday while she was in ward, and later even visited her at home after she was discharged, and they have been keeping touch via whatsapp. when i had to go on leave for 2 weeks after my recent miscarriage, we had to postpone her clinic appointment with me, and that's why she asked if i was well too during the whatsapp chat. it's so amazing that even though she herself is unwell (she doesnt even go to to school anymore because she tires easily) she still thinks about my health. here's to you, your health and your happiness, darling baby. God bless you, not just for being so naive and kind for saying i look 25 ;), but for being the sweet strong thoughtful you, as a reminder for the rest of us to love life and always be thankful.