This is going to be real mushy stuff. Main purpose is to point out that parents ought to trust doctors, stay away from mediums and Chinese traditional medicines where the health of their babies are concerned. If there is a tinge of frustrations on my part, I can’t help it.
When Vincent died, someone very close my husband did not attend the funeral. In fact, only one (out of 7) sibling turned up. But to rub salt into it, I was told that this person couldn’t come because her pregnant daugther is getting married. Bad luck from me will rubbed off on them, you see. (funeral of babies are usually shunned because Chinese find them not important and highly ‘suey’ bad luck)
Months after that, she dare not even speak to me on the phone! At that point, I was very, very hurt because we were not even invited to the wedding.
When the baby was born, he has fever and warded at the ICU in a Govt. Hospital. I was freaked out to hear of a newborn having high fever and offered to arrange for the baby to transfer to a private hospital. I know my hubby will willingly pay for the medical expenses. I had even arranged with the doctor in the private hospital to accomodate this baby, Baby D. But our offer was turned down.
Baby D was a very problematic baby and the grandma will call us at odd hours to ask for help. No, she will call only my hubby eventhough she knew only I have the answers (like colic, constipation and all those stuffs). Why? Probably because I am such a bad-luck person, no one likes to refer?
Baby D’s parents are teenagers, hence, all the care-giving are under the two feuding paternal and maternal grandmas. If baby D is sick, the order of the day is to seek a medium (i.e. some conman acting like some know-it-all god), a sinseh and when things turned real bad, just any doctors.
Once, he was warded in some smallish clinic cum mini hospital for a long time. My constant urgings of going to see Vincent’s former doctor normally fell on deaf ears. Until one day, when baby D did not respond to the treatment in the mini hospital. (note : they are not entirely poor).
Out of desperation, they finally went to a bigger hospital under Vincent’s doc. All these turmoil on baby D’s health usually made me sick to the stomach. I am someone who has to be in control of situations and when I cannot do anything about it, it just made me so, so desperate. When baby D was in this hospital, V’s doc found out some severe condition. I remembere I feel so sad when he told me, “Lilian, I am sorry, I hope I will not let you down.”
From behind the scenes, I keep bugging doc to do all he can. Baby D is found to have no immunity. Doc wanted to give baby D some IV liquid to strengthen his immunity but guess what the grandparents said? They did not want anything that is sourced from other human! (google :hypogammaglobulin) So, they seek mediums and gave him some talisman. The condition was similar to leukemia or even worse, AIDS and doc told me that he may need to refer baby D to KL.
The result? The grandma told me the talisman worked like magic. Baby D’s immunity picked up and he was discharged. But, the family did not return to see doc anymore after that. Not even for follow-up, not even when baby D continue to have a fever.
Months and years passed. I got my own toddler now. One day, we were at a family dinner and I noticed that something is severely wrong with baby D. His limbs were moving in an awkward manners, he is very much behind his developmental milestones and just doesn’t look ‘normal’. I related this to the eldest in the family so that she can break the news to baby D’s grandma. I told her that something is wrong with this baby, see a doctor immediately.
Of course, this makes me very unpopular because I am like a harbinger of bad news. I explained that babies with some mental or physical retardation CAN be helped with early intervention. From far, I observed and whenever possible, I will nag my hubby to nag baby D’s grandma. Most of the time, these usually fell on deaf ears.
Eventually baby D developed seizures. And is found to have Diabetes Insipidus. It is a condition whereby he can die if he did not have enough water. Water passed through him too fast, making all the body system screwed up. I referred this situation to a Professor in a hospital in KL and she was so kind to talk to someone else (a genetist) about this. She told me that this is a life-long condition and sadly more and more problems will arise as the child grows. I asked if the family wants to be referred to KL? I could talk to the doctor in the Government Hospital here in Penang if they do not know how to go about it.
But again, the family brushes of the matter, saying that baby D is a slow to develop child. He can’t walk, he can’t talk and cannot eat solid food at 2 years old. The last time I met him was during the Chinese New Year gathering. Being older than my toddler, he is way, way smaller. What broke my heart is him, begging (with both palms open) for water when he saw one of the auntie holding a cup.
After so many years (3 yrs), I had learnt not to meddle and just pretend not to see anymore. But I had always lived with all those ‘what ifs’ like:
1) What if they had allowed baby D to be assessed by the private hospital at birth?
2) What if baby D was under the care of Vincent’s doc (the few neonatalogist/specialist in newborns in Penang) at birth?
3) What if they had follow -up only with doctors and not resorting to so many mediums and traditional medicines?
4) What if they had given baby D a chance of being assessed for his developmental delay instead of keep brushing off that he is ‘just being slow’?
5) What if they had listened to me to go to only one doctor (specialist in the Penang GH) instead of checking in different private hospitals?
Baby D’s condition is genetic. But since the condition wasn’t detected earlier, probably, baby D must have spent his life screaming for water which the adults mistook for colic or ‘just being fussy’.
Although we have some great doctors in the Govt. Hospital, the sad thing is the adults will only go to the doctors when things are really bad. They will drag the condition for a while before referring to the hospital. And then, they did not go back to the same hospital to allow the doctor to diagnose further.
Eventhough I like to stay away from knowing what is happnening, sometimes words got around to me through the vines. Once, the grandmother of baby D asked a middle person to ask me to give her my sons’ hands-me-down clothes. I was flabbergasted as it seems silly as my kids clothes are rags and if there is any, I will need to keep for my toddler instead. Moreover, they are not even poor! Then, it dawned on me that their superstitious belief is – If they give baby D the clothes of some healthy kids, baby D will pick up the good ‘chi’ from the boys. Fuck! In as much as I want to be nice and kind, I got so pukey. I refused to give, of course. Hellloooo…remember? I was the ‘bad luck’ you were trying so hard to stay away from. Thank God for that or else probably my poor Vincent would have gotten the blame for passing on this bad luck. And now, you have the nerve to come to me for some ‘good chi’? Aren’t you afraid of me and my bad luck?
I had nagged my hubby to drill into their heads to face reality. Reality is baby D is not ever going to be ‘healed’ of his condition because there is no cure for diabetes insipidus. One can only control it. Baby D is not going to grow up normal so the earlier the family accept it and work hard to give him all the proper medical help like physio-therapy and etc, the better future baby D has. Though I know it is hard to accept, they have to face it. And maybe baby D’s future is going to be much tougher and they have to be prepared for long term stay in hospitals outside of Penang.
Well, baby D is now referred to a hospital in Klang Valley. I pray that he will not have more problems than what he already have. And may his family, paternal and maternal, starts to work in unity for the benefit of baby D. Hearing the adults squabbling when a child could be dying is damn, damn, frustrating for me.
To the mothers out there, your child is your responsibility. No matter how young, how much fun you want to have, how poor, illiterate, busy or whatever excuses, there is NO EXCUSE for not taking full responsibility of your sick child. Stay by your child side, no matter what.
To all the kind folks out there, please insert the announcement of our Mother’s Day charity project, Mothering Mothers in your blog, if possible.
You can just copy and paste this:
Belaian Ibu Untuk Ibu/Mothering Mothers
Do something special this Mother’s Day. Cheer up mothers who are taking care of their ill-children in hospital. Buy them a gift to warm their hearts. All you need to do is to get the gift, drop it off and the members from MyMomsBest will gladly distribute them for you. Full details available here at : MyMomsBest