ESRD & I - The Beginning of the End

CHAPTER 5

Throughout 1986, after the termination of my pregnancy, every appointment to the doctors at the Kuala Lumpur Hospital brought the same news. My kidneys were progressively deteriorating. The doctors were just waiting for my condition to get to the terminal stage, ESRD - End Stage Renal Disease; before they could start any plans for me. The downward spiral to that end was inevitable.

Nothing much was being done. I guess nothing much could have been done. I was given mainly “Alutabs” to curb the gastric like pains I was having; but that was about it really. I got fed up and decided by myself, not to continue with my appointments. To my clouded mind then, I had done my part when the doctors told me to terminate my pregnancy. I guess I tricked myself into believing that once the termination was done, I would get better; the kidneys would be well again.

And so, when the date came for my appointment to make plans as to what plan of action I was to proceed with, I played truant. Without telling a single soul, not even my husband, I tagged along my brothers and sisters and their families to Malacca to send off my eldest niece for registration at ITM Melaka. (Since then it has become tradition for us to convoy when sending off nieces and nephews for further study). Nobody knew then my condition was actually fast deteriorating. To be with the crowd; together with family members boosted my happy hormones endorphins. I was cheerful and felt good all around.

Unfortunately that was not to be long lasting. Not long after that, just prior to the Chinese New Year celebration in early 1987, what may appear as unfortunate incidents happened which led me back to the hospital. I would say that they were blessings in disguise. The first one was my sudden crave for durian. Durian is an absolute “no-no” for ESRD patients. High in potassium, it can almost certainly slow down an already enlarged heart due to water retention from kidney failure. I knew that for a fact even back then, but I guess I was adamant. I wonder now if I was purposely trying to end my miseries throwing all caution to the wind. Nothing was coincidental in life; everything has a purpose. I did not know how I managed to sweet talk my husband into buying the most delicious tasting durian for me; with its thick sweet succulent content. I think I took about 3 pieces to quench my craving; after which I remember distinctly feeling queasy and a little queer. I had trouble breathing – I could feel my heart was beating progressively slower; almost laboured. All I could do was lie down and so I went to bed early that night. We lived the simple life then; just a mattress, no bed. And as I lie down beside my husband that night, it felt as if my time was up. I could hardly feel a heartbeat. So I just crossed my arms over my chest, closed my eyes, mouthed the kalimah syahadah and quietly accepted my fate, whatever it might be. I know until today, my husband never knew that I was preparing myself for death that night. I guess I must have passed out after that.

I was awoken the next morning by my husband’s shuffling around as he prepared for work. I was still alive, I concluded gratefully. My heartbeat had returned somewhat to normal count, although very faintly. As I tried to get up, I realised I was still too weak to even stand up. It took all the strength I had to do my 2-rakaat subh prayer. Walking my husband to the door was out of the question. Thankfully he understood.

I continued resting on my mattress, dozing off from time to time. At 11 am, the postman came and honked his motorbike. I got up to get the mail. To my horror, I found out that it became the most laborious task just to walk that few metres to the front gate and back. That was when I panicked. I weighed only 33 kg then, yet my legs could hardly carry me! My heartbeat was terribly slow, refusing to beat any faster. I felt light headed, spinning almost. I knew I was heading towards the end.

When my husband returned in the afternoon, I voiced out my anxiety; careful to avoid mentioning that I felt like dying. I did not want to hear myself say it aloud – maybe deep in my heart, I was just not ready to go yet. I requested to be sent to my sister’s house in Damansara Utama. It must have been the most correct decision I have ever made – for two reasons. That very evening my husband sent me off to my sister’s house. He stayed the night, and the next morning went off to work from my sister’s house.

The next evening, I got a call from my husband from home. In a rather anxious voice, he informed me that our house was broken into and that we had been robbed. All praise be to Allah! I cannot imagine now what would have happened to me if I was in the house when the burglar got in. The sheer shock could have meant the end for me! All our things from UK which were still in boxes were taken, my watch, all my husband’s shirts (except those in the washing machine) were taken in our hand luggage. I found out later that the burglar was a young drug addict who lived at the end of the street where I lived; the son of a notable inhabitant.

My husband took me home to check what else was missing from the house. Then came the second shock – a major one! The short motorbike ride from my sister’s house was taxing enough for me, and the upturned condition within my house was the limit. Suddenly, as I turned to look at my husband, he appeared to me as a two-headed fierce looking monster with long teeth ready to pounce on me! I thank Allah now for my daily practice of reciting the Quranic verses; for it kept me from shouting hysterically and my husband would surely have thought I have gone bonkers! Instead, I quickly recited the ayatul Kursi, hoping the image would go away. I opened my eyes – and still it was the monster looking down on me. I shut my eyes again.

This was when my logical mind took over. I am so truly grateful for my university studies in Biology. I have known then that when the toxic creatinine level rises to a certain stage in the blood, it will start to play havoc on the brain. It will cause hallucinations! And that was it, I told myself. I was at a certain stage of toxin accumulation in my blood that I was beginning to hallucinate. This knowledge comforted me a lot.

I kept on reciting verses from the Holy Quran, trying to maintain composure, greatly comforted in the knowledge that this was just a hallucination due to toxin accumulation; I was not possessed. Although the fear was so real, both the knowledge and reciting the Quran helped me keep my cool. I knew at that moment, I was at the end of my tether.

Until today, I have the deepest respect for my knowledge in Biology that has helped me in my most trying moment – and possibly saved me from being wrongly accused as being possessed or insane. And I truly believe that my near death experience has molded me into the person I am today..Thank you Allah, Alhamdulillah.

(c)norhafizah manaf

Motherhood - What It Means to Me

To My Boys,
I guess I was a mother long before I ever had you. I have always loved children; and always wanted to have children of my own. I grew up in a large family; where there was ample love between my parents and us 11 children. With so many of us, we had to overlook so many luxuries in life; but they did not matter. We were happy just the way we were.

I guess I was blessed by Allah with a quick mind, Alhamdulillah earning a scholarship to the UK. And that was when I believe, I started being your Ummi. By Allah’s mercy and grace, in UK I really got to know Islam and myself. I read extensively about parental duties and hadith from the Prophet Muhammad s.a.w stayed in my mind. I learnt from the hadith that when a child is born, he is like that of a piece of white cloth. It is the parents that colour him.

Narrated Abu Huraira: Allah's Messenger (peace and blessings be upon him) said, "No child is born except on Al-Fitra (Islam) and then his parents make him Jewish, Christian or Magian, as an animal produces a perfect young animal: do you see any part of its body amputated?" (part of a Hadith in Bukhari).

It began to dawn on me of the gravity of my responsibilities. How was I to make you true servants of Allah – Abid; when I was not a truly practising Muslim myself. I was lacking in my faith in so many aspects; and I knew I had so much learning to do before I could even have you guys.
And I knew too I could not do it alone!

So, I prayed hard to Allah to bless me with a husband who shared my vision and mission. I knew to get that I had to strive to be the best too. And I used every opportunity I had in UK to better myself as a Muslimah ....so that I be worthy of being your Ummi.

And Allah helped me with a husband who shared my vision and mission; as far as raising children were concerned. Alhamdulillah, he was supportive in my strategy to raise you guys up. Boys, I love you guys to no end. If at all possible I don’t even want an iota of harm to come your way ... what more the whispers of Satan. Thus from even before conception, I made sure I was protecting you guys with Allah’s help. I can only hope that my prayers were answered. Throughout my pregnancies, I tried my best to eat only the halal and good food that would make your bodies strong. It was indeed a blessing when the doctors placed me in the ward for months when they wanted to monitor my renal function during pregnancy. What seemed to be like a prison sentence turned out to be quality time for me to catch up on my Quran recitation and Zikrullah to make sure that your minds would know your Creator even before you guys were born. Alhamdulillah!

And when you guys were born, we made sure we followed the Sunnah of Prophet Muhammad s.a.w - to have the Azan, the call to Prayer and Success be the first thing that reached your ears. Hopefully, may Allah bless you guys with success both here and in the Hereafter.

Then came to the real core business of raising you guys. I remember these words of our Prophet s.a.w.:
Messenger of Allah (Peace and blessings of Allah be upon him) used to speak about children - boys and girls - and Say: "O Muslims, O fathers and mothers, O my followers, be kind and compassionate towards children, for someone who is not kind to children has no place amongst the Muslims."

Children are blessings: (Muslim children, Islam and children, Qur'an and children, Muslim Parenting)

Allah (SWT) says in Noble Qur'an: "Kill not your children for fear of want. We shall provide sustenance for them as well as for you. Verily the killing of them is great sin." Noble Qur'an (17: 31)






I am thankful to Allah that my own parents provided me with a good education and that Allah had blessed me with a keen interest in knowledge. Same goes with your father. Alhamdulillah, by His Grace, we managed to get decent jobs to provide you guys with your daily physical needs quite comfortably. Emotionally, I tried my best boys. From day one, I have tried, within my limitations, to be always there for you guys. I pray I shall always be there for you in times to come; and always be there for you even when you feel you no longer need my assistance. I read and reread parenting in Islam, psychology books on parenting; and shared with other parents, the contemporary as well as the veterans. Guys, I have tried to be the smartest mother I could be, answering patiently all your questions – and you guys were very inquisitive boys. I wanted to be your main source of reference, so that what was processed through your minds was what I fed you.

Boys, I tried my level best to make you guys balanced in all aspects. I am not that well versed in our Islamic faith; but I tried to be a good muslim mother to you. I familiarised you with what that it is advocated by our Prophet s.a.w – that of manners! Alhamdulillah, your grandmother taught me good, to behave well. So I adopted the same like manners upon yourselves; added with the proper, documented teachings of Islam pertaining manners. I may appear to be rather restrictive on occasion; for instance not allowing you guys to even go out of the house when Maghrib approached; when you watched behind barred grill while your cousins played on the front porch. I was sad too boys; my heart went out to you guys. I know how you guys wanted badly to join in the fun and play. But I was just trying to follow the Islamic way of life. I wanted the Islamic way of life to be inculcated in you guys; to be a part of you. I could only pray that one day you will see the reason for my “strictness”.

Islam begins with the word “Read” – an indicator to the importance of knowledge. Yes, I must admit, I never joked around where education is concerned. I read all I could get my hands on the best approaches to educating children. I named you guys with names that held the highest respect to knowledge; in the hope that you guys would honour knowledge and be responsible for your names – Noble and Knowledgeable; Intelligent and Excellent. I reminded you guys again and again that you had to respect your names, uphold and be true to the meanings of your names. Thus far, I am grateful to Allah that you have held up your names well indeed. I am sorry if I was always a bit serious, but believe me, it was my way of telling I don’t want you guys to lose out in the matter of knowledge. I can’t give you wealth for all of your life, but I can hope to leave you guys with the love of knowledge and the dignity of being learned men.

More importantly, your father and I, we both know that our understanding of Islam is so basic. More sadly is the fact that I know so little of our Quranic language – the Arabic language. So, from very early on, your father and I decided to relocate ourselves to somewhere where you guys could get the proper Islamic education – from Tawheed to Khat. Because of this your father now drives more than 40 km a day to his office, and for the past 11 years he has been driving you guys to school, and in the evenings I would be fetching you guys. I am sorry that you guys had to get up very early every morning so as not to make your father late; and that often you guys have to wait quite some time before I reached school in the evening because I was always too tired to rush. But we wanted to give you the best education boys – the Islamic one. I know you guys always compared how strict I was in letting you go out with your friends. Believe me, it pained me too to have to make decisions forbidding you from going out with your friends when you were younger; but alas, I am a woman, a mother, and I get overly anxious when I don’t have any guarantees to your safety. I know sometimes your friends laughed at you guys for not knowing how to play the snooker or bowling, but it was my way of protecting you from being too familiar with the world outside before I am convinced that you guys would not be too easily influenced by what’s out there in the world.

I know to so many, and perhaps to you guys too, I may seem to put a hand in every aspect of your life. Believe me boys, I do not do that out of possessiveness, I do that simply because I am not a good Muslimah, but that I am a mother who tries my best to be a good muslim one. I certainly cannot tell you what the Syariah says pertaining this or that matter; but I can protect you from being dragged into harm’s way. If at any point you ever thought of rebelling, then I hope now you know the reason why I did what I did.

You guys are almost grown now, and I would like to think that slowly I am learning to let you guys go too. I am just a simple woman, and it is my utmost hope and wish that I have done my job to the best of my ability. I can only hope and pray that my way of bringing you guys up have given you a strong solid hold on you to know who you really are, know your place in the eyes of Allah, know your duties as His servants. I can only hope that you guys will go out into the world knowing full well your responsibility as a Muslim Mukmin, a man, a son, a husband, a member of your society. It is my greatest wish that I have fired in you enough the love for knowledge and the strength and zeal to excel, to be the best in any field that you partake in life.

And last but not least, I pray to Allah Almighty that you guys know that whatever that I did for you guys, I did to my best abilty as your mother, with the best intention for your success here and Hereafter, in the best way that I know how. I know I goofed up many times, and will continue to goof up many times more, but may you guys know that everything that I did in the past, present and in future, I do them out of love of a mother – a title, a responsibility that I was honoured with when you guys came into my life. And with that title, come all the joys and pain and tears and laughter and all the love that fills my heart so – that I have come to be so grateful for .... when you guys made me Your Mother! When you guys chose me to be Your UMMI!

I love you guys. Thank you for awarding me this motherhood.

ESRD & I - A Painful Goodbye

My appointment with the O & G was made for the very next day – straight for admission. By 8 am I was already there and was seen by the specialist.
“We will give you something which will cause your uterus to contract to expel the baby,” he explained gently. I remember then asking anxiously, “If the baby comes out alive, you will try to save the baby, wont you?”

The doctor had looked at me long and hard. Then he let out a slow sigh and spoke, “Do you know why you are having this procedure done?”
I simply nodded. He looked at me a moment longer before he spoke again, “Alright, of course. If the baby comes out alive, we will save him.”

(I had heard at that time that in Australia, a 24 week baby had survived premature delivery and sustained in a specialised incubator ; his body rubbed in saffron. Alas, I had only just begun my teaching career and did not have the means to go to Australia).

I was then placed in a 2-bedded room and as soon as my husband left, a nurse came and administered the injection. Almost immediately I felt strange in my tummy and had to lie down. Immediately I felt an intense cold and pulled up my blanket. But I was still shivering. I called the nurse who happened to check in on my roommate and asked for an extra blanket. She returned with a blanket and covered me up but I was still shivering vigorously, so she added another blanket on me. It was then that I felt my baby inside me suddenly turned and tossed so restlessly; almost as if he was writhing in agony, as I suddenly felt the wave of contraction in my uterus. I pushed away at the blankets and looked down my tummy. It was moving in all sorts of directions; which only told me that my baby was in huge discomfort, perhaps even great pain. Immediately tears came rushing down my eyes, as I put my hand over my tummy as if by gently massaging my tummy I could comfort my child inside me. I just couldn’t stop the tears. All I could do was to cradle my tummy and whisper hoarsely, “I am sorry baby. Ummi is so sorry...so sorry...so sorry!” – (taking a pause; too difficult to write this down. The tears are slowly flowing down even now – the memory is too vividly etched in my mind).

The contraction lasted for a short while only; but it seemed like a lifetime. Eventually it slowed down, then stopped, and my baby quietened down. The intense cold I felt earlier disappeared, leaving me utterly exhausted.

What went through my mind at that time? As I dozed off into an exhausted slumber, I gently stroked my baby from the outside and spoke quietly to him, “If you can fight baby, then fight to survive my son; but if it is too difficult, then just let go. I love you so much and I am terribly sorry for doing this to you; causing you so much pain. Please forgive me my son, please forgive me.”

The whole procedure was repeated at around 12 noon and I had to go through the ordeal again. I cried brokenheartedly as I felt my son struggle inside me. But somehow, his movements were not as strong as the first time. The next injection was due around 6 pm.

At around 5 pm my husband came to visit after his office hours. He sat at the edge of the bed near my feet as I told him what had happened. As he leaned closer to hear my account, suddenly a gush of water burst from me splashing onto his shirt. Panicked, he rushed out to alert the nurse. I knew immediately I was in labour, as I suddenly felt the urge to push. A young male doctor, Dr. Amir arrived and helped me with the delivery. I was glad he was understanding and comforting, encouraging me all the way as I sobbed my heart out. The feeling of your very being wrenched out from you, leaves me no recollection at all of the pain of delivery.

And so, on Thursday, 23rd January 1986, at 6.23 pm (12 Jamadil Ula 1406), my first child, whom I named Abdullah bin Zulbahri was born – still and lifeless.

Goodbye Abdullah, my son. Wait for me in heaven InshaAllah. To me you are a martyr – for you have given up your life so that I may live. I just want you to know that your sacrifice have not gone wasted. Your sacrifice have paved the way for your two brothers, Ashraf Ilman and Zakiy Mohsin. They know you so well like you are amongst them when they speak of you; and of how you look – with your very fair skin, and that birth mark on your eye, so exactly like your father’s. When you were brought back to your Atok Manaf’s house, it was your Pak Aral and Mak Mok, my elder brother and sister who bathed you. You were so small and fragile that they had to place you in a vegetable basket and gently drew water over you.

Did you know that the caretaker of the cemetery near our house was kind enough to allot you a space out of sympathy? Everyone loves you Abdullah, and your uncle and aunt kept saying how so much like your father you looked. Your father had told me later that on that night, whilst your Atok Manaf kept vigilant guard over you, he curled up alone on the bed and sobbed his heart out for your loss, hugging his knees to his chest, searching for solace he could not find. And did you know that after I was discharged I went to stay at your Atok Manaf’s home just to be near you? Then one day it rained heavily and I suddenly rushed out of the house and then stopped short when your Pak Aral called, “Adik, where are you going?” Did you know what I said? “Abdullah...he will get wet,” and then I seem to remember. Your Pak Aral just stood and stared when I slowly walked back into the house.

I miss you my son, never a day passes by that I don’t think of you. Every year, I wish you a silent happy birthday on 23rd January. You would be 24 now my son. But its alright, I know you are in good hands. I often dream of you when you were a baby. There was always a fair lady looking after you and guarding you jealously whenever I came to visit you in my dream. So I know you are in good hands.

Dont worry about us Abdullah. Your Ummi is well now, thanks to you. Your brothers are doing fine and they love you dearly. You have another brother 4 years after I lost you, but I had a miscarriage. Your father and I, we both still ache for you, but we will be patient till we meet again one day God Willing. Ummi takes comfort everyday from this hadith of the Prophet:
“Some women requested the Prophet to fix a day for them as the men were taking all his time. On that he promised them one day for religious lessons and commandments. Once during such a lesson the Prophet said, "A woman whose three children die will be shielded by them from the Hell fire." On that a woman asked, "If only two die?" He replied, "Even two (will shield her from the Hell-fire)." ~Sahih Bukhari

(c)norhafizah manaf

ESRD & I - No Title For This

22nd January 1986. My husband and I finally made our way to the Nephrology Department in HKL to meet up with Dr. Zaki Murad, to discuss our decision regarding my pregnancy. We had delayed our decision for nearly a month now. As soon as I registered my name at the counter, the staff nurse told us to wait as Dr. Zaki had instructed that he be told immediately of my arrival. (Perhaps he did not want me to be in the waiting room long enough for me to change my mind). True enough, in no time at all I was summoned to Room 2.

This was the first time my husband met up with Dr. Zaki. As if understanding my troubled state of mind, Dr. Zaki turned to my husband and addressed him. I was relieved that he had decided to mediate the meeting.
“So, En. Zul, have you and your wife come to a decision yet?” My husband has always been a man with few words (still is till today). He paused, stammered a bit before asking, “I would like to know is there any other way to treat my wife without having to give up on her pregnancy?”

Dr. Zaki looked at me with a questioning look. I stared blankly back at him. Somehow I think he understood. He turned to my husband and patiently began to explain.
“I am sure your wife has explained why I wanted to meet the both of you today. Your wife is suffering from End Stage Renal Disease (ESRD); which is right now aggravated by her pregnancy. I don’t think in her condition, she can carry the pregnancy through to full term. Even if she did, I am not sure how it will affect the baby; with all the toxins that is building up in her. Continuing the pregnancy will only endanger her life. But I am sure you already know this.”

There was a momentary silence, as both of us contemplated Dr. Zaki’s words. What I can remember is my mind was blank – a numbness taking over my soul and mind. I remember feeling as if it was not me that Dr. Zaki was talking about.

And then my husband finally spoke.
“We have decided to save my my wife. We will do as you advised. We will stop the pregnancy”.
I cannot imagine how difficult it must be for my husband to say those words. But both of us have prayed long and hard fo God to help us decide. We had done our Istikharah Prayer (Prayer for Guidance – see appendix). And this was what God has ordained for us. We remain thankful to God for anything that befall us anytime. We both have faith that there is always a blessing behind anything that befell us.

I remember clearly my siblings’ reactions when we spoke of our decision. My parents, especially my late Abah; he supported our decision fully. It was understable – I was his child. Some of my sisters thought that I was not showing full trust in God (tawakkal); taking the future into our hands.
“How do you know that the doctors are right? Why don’t you put your trust in God and just continue with your pregnancy? Let God decide. What you are doing now is taking things into your own hands.”

My grand aunt and late brother suggested traditional/alternative options. Oh I assure you we have exhausted all options and all resources. Sadly, things just did not turn any better. My condition continued to worsen. We simply had no choice.
I never minded what my siblings had to say. They did not understand. It was enough that I knew it was something that was way out of my hands. I knew I loved my unborn son (and still do and will always do until the day I die; when I hope to meet up with him again, God Willing). I knew my husband felt the same too. He had always wanted a son who will fight for the cause of Islam; yet now he was giving up on one! We both knew the excruciating pain of making that decision. And the one comfort that we held on to were the words of Sayidina Omar r.a. on fate – “that we are moving on from one fate of Allah into another fate by Allah”.

“We have delayed this long enough; the foetus is entering its 24th week. From now on, its growth will surely affect your wife’s health. I will refer you to the O & G department for an immediate TOP – Termination of Pregnancy”.
Dr. Zaki’s voice sounded so distant. This was all like a dream to me – a long, long bad dream.

Addendum:
One friend told me recently he is addicted to his children. Anyone who holds this same point of view will surely know that when any one of our children proceeds us to meet his/her Creator, a part of us dies too ... the void never to be replaced; no matter how many other children we may have.
And for this reason, this memory stands out clearly in my mind.

(c)norhafizah manaf

ESRD & I - As God Wills

I was adamant this time. I simply refused to listen to the Number One Specialist then. But God bless his soul. He was the epitome of the word “patience” itself. Far from admonishing me for my outright stubbornness, he admitted that perhaps he was not the best person to advice me, and suggested that I spoke to his colleague. So, immediately I was referred to Dr. Zaki.
Dr. Zaki was as kind and as soft spoken as Doktor Sulaiman (now Datuk?/Tan Sri?). Yet somehow, it was the way he presented the dire consequences of continuing the pregnancy that seemed to make sense to me; or at least made me agree to think and consider what he was telling me. I asked him that I was not the sole decision maker in this whole matter; there was my husband whom I had to consult. To me personally, he would be the ultimate decision maker in all this sorry state of affairs. Dr. Zaki agreed that I should talk things over with my husband, and we made an appointment for the three of us to meet again for a final decision.
Returning home, I struggled with the task of delivering the bad news to my husband. How do I tell my husband that we might possibly have to terminate this pregnancy? I thought long and hard, desperate for an idea on how to relay this sad news to him. Worse still, I simply could not predict his reaction. When I got home, I approached my brother first and told him what the doctors had advised. I knew there was not much he could do to help. But I just needed to share my pain with someone. This was something too heavy for me to bear on my own. I knew my husband would be devastated as well, so I sought my brother out for comfort and strength. I could see from his looks and few words, that, he too was at a loss for words. But I still remember clearly him telling me that my health should come first.
Comforted by my brother’s words, and with whatever strength left in me, I wrote a letter to my husband. I knew I wouldn’t be able to tell him verbally. I told him briefly what the doctors had told me, and I ended my letter saying that I love my child that is growing in me, and that if he chose that I should carry on with this pregnancy, I would; and I meant what I said.
Later that night, when he had read the letter, we talked. He seemed calm enough and suggested that we sought what our faith decrees for matters such as this before we made any decision. His opinion was that whatever Islam decrees, we should stand by that, and God Willing, Allah will help. I agreed; feeling a sense of deep comfort that Allah would know best. Before the scheduled appointment with the doctors, my husband met up with the Muslim scholar and health practitioner Prof Harun Din to ask his expert opinion on what Islam had to say for a case such as ours.
Meanwhile, my baby was growing in me – and one day I felt a strange pulling and tugging inside me. I was worried and wondered if my state of health was affecting him. I recall clearly voicing my concern to my late grandaunt that frequently came to stay.
She said, “There is absolutely nothing wrong with your child. The baby is kicking you from inside.”
Her answer brought mixed feelings to me. All of a sudden I felt this surge of love for my baby; the feeling so overwhelming that my heart felt like bursting. I cradled my tummy; and imagined myself cradling him in the crook of my arms. I knew my baby was a boy. During the last visit to the maternity clinic, the obstetrician had run an ultrasound scan and determined his sex. I smiled to myself. This was a spunky child I had inside me, kicking away from inside his mother’s womb.
And then I sobered up as I remembered the outcome of my husband’s meeting with the Professor. He had informed us that in the Islamic faith, when there are two lives to consider, one alive and one whose life is as yet uncertain (as was my unborn child), it becomes imperative to save the life of the living.
How can I? How can I possibly give up on my baby now? True, his kicks were only just feeble twitches, but to me, I felt he was as much alive in me as I am. I am his mother – no mother would give up on her child. Personally at that point I would rather give up my life, if there is any chance at all that my son would live. My heart was being torn apart. The Professor had told my husband that if God so Wills, there would be other children once I was treated and cured. But if we insisted on my carrying the baby, and should I die, then that would be a life lost and the end of my generation. My husband was satisfied and decided that we would adopt the principles of the second Caliph of Islam, Umar al Khattab, and that was we were succumbing to God’s fate while stepping into another of His Will.
Yet, when I felt my baby moved, I knew that nobody would understand the overwhelming feeling of love that only a pregnant woman can feel. I was willing to die for my son. I am his mother, born or unborn, and all the love there is in my heart and soul was for him, no sacrifice was too great for my first born. How can I give up on my first born? How can I???

(c) norhafizah manaf

ESRD & I - The Trial Begins

November 1984. I was back in Malaysia for over four months; as a biology graduate, as a wife to my husband. I was returning for good, but my husband had another year to complete and had gone off back to the UK. Meanwhile after a four month break of just staying at my parents’ home I finally received a letter to proceed with my Kursus Perguruan Lepasan Ijazah (post graduate teaching course) – a one year course in Maktab Perguruan Temenggong Ibrahim, in Johore Bahru.
Thus, once again I packed my bags and took the train with my constant companion, Habibah. The course we were to take were the first of its kind run for overseas graduate students; a one year course. Later I found out, that the syllabus were mostly prepared almost impromptu; the government not really knowing what to do with us graduates from overseas universities. For most of the time, it was just a trial and error teaching for us. At one time, when we were taught how to cook a simple dish, even the guys found it rather humorous. I remember one guy who cooked even better than the lecturer can theorise. And why not, he said, he was living on his own in UK for five years, you would wonder who did his cooking all that while? And another example at how ridiculously unprepared the ministry was, for our Islamic studies classes, we were assessed based on what activities we did whilst we were studying abroad. For the love of God! What has that to do with our present attendance there for the course. I was reluctant to disclose my activities in the UK, and it was no surprise that I got a big fat C for my religious studies in the first semester. Forget the fact that I wear the hijab, or that I pray five times a day, or that I could recite a few verses of the Quran by heart. Oh well...there are more important things in life than an academic grade based on how much you reveal you private activities.
Life was going slow enough until mid July '85 when my husband completed his studies and came to join me in Johore. By then I was doing my six-week teaching practical stint in Benut, Pontian. I had rented one room to share with my husband in a huge semi-detached bungalow in Pontian, whilst my other friends occupied the other rooms. Not long after, my husband got his appointment letter with the then Jabatan Telekom, and had to return to Kuala Lumpur for his probation period.
It was at this time, in between practical teaching, attending classes and going back to Klang over the weekends, that I realised I was not feeling quite my normal self. I suddenly found myself very choosy over my food and with special craving for some. I was feeling tired and sleepy most of the time. Habibah was worried that my kidney condition was getting worse and fussed over me. Yet, somehow, deep inside me, call it my motherly instinct, I knew it had nothing to do with my illness. Somehow, even before the test at the clinic, I knew I was pregnant.(this same instinct I felt with all subsequent pregnancies).
It was a really tough first trimester for me. I just could not bring in more than a few morsels of rice. All I could tolerate was plain tea and plain cream crackers. My condition grew progressively worse, until one day I had to be admitted for risk of ketonuria. I was just not eating enough, until my body had no choice but to convert the fats on my body as energy source. (see appendix). This was a medical emergency, so I was admitted and immediately glucose was administered into my system via intravenous injection (the drip).
And so, once again I was back in touch with the hospital – this time in the Sultanah Aminah Hospital in Johor Bahru. Once again I was referred to the Nephrology Department, and to a specialist. Now, being a biologist, it did cross my mind if my pregnancy would aggravate my renal condition. I was ready for any consequences. Meeting up with the specialist in the hospital was an utter disappointment, I must say. I was about 8 weeks pregnant, and I was willing to discuss options. All the questions the specialist had asked me had nothing what so ever to do with my condition. Instead, he was asking about a colleague of mine from the college – asking me if she was married, if she was soft spoken, if she was friendly, if she had a boyfriend. For the love of God ... what has my colleague in college got to do with my appointment today? Please don’t tell me I had waited for so long only to be asked these absolutely irrelevant questions.
Finally I got the break I needed and started needling him with questions of my own. I asked him directly if it was clinically okay for me to keep this pregnancy. I was in my early stage, and I was ready to discuss options if I had to. And I asked him what I should do to maintain maximum kidney functions. His answer? “Oh of course, renal problem will not affect your pregnancy, and to maintain your kidney functions I suggest you eat one damn egg every day.” I swear to God Almighty, these were his words!
The paradox of his statement which kept on reeling in my mind was that I had learnt in my final year of Biology (and learnt it with deep interest) that, when the kidneys are diseased, or impaired, protein was the first thing that should be cut down. And here the doctor was telling me to take one damn egg every single day. I was utterly confused. All I could tell myself was he was the specialist, I was just a 24 year old first time mother to be, and teacher to be...what do I know?
By the time November 1985 came, I had finished my one year course in Johor and was back in Klang with my husband and my parents awaiting my first teaching posting. My pregnancy seemed to be progressing well and I was eager to continue with my follow up to chart my progress. Since I had an uncle who was a renal specialist (borrowed from Indonesia) in Kuala Lumpur General Hospital, my father thought it would be a good idea for me to get my treatment there. After all, the GH KL Nephrology department was fast becoming one of the most advanced department in the Asean Region. Thankfully, with my uncle’s influence I was referred to the Nephrology Department without much of a hassle.
When I first met the specialist there, I handed to him all the documents and test results from the Salford Royal Hospital. Somehow or other, from hence on, he would refer to me as The Salford girl. But perhaps, that was the only “nice” moment in the appointment. Immediately when I told him I was in my fifth month of pregnancy, he was shocked; and immediately told me to terminate my pregnancy. What? Terminate my pregnancy? When I can already feel him moving inside me? And what of the specialist in Johor Bahru who told me I could keep my pregnancy. This is absurd! The hell I was going to give up my baby now! I had been open minded, open to suggestions when my baby was still early in his foetal stage. But now I was dead set to keep my baby.

(c) norhafizah manaf

ESRD & I - First of Many Admissions

Wednesday, 4th April 1984 – I was admitted to the Salford Royal Hospital for a renal biopsy. Before that, however, they had to run extensive tests on me. I was an Asian, so they wanted to know my background - geographical background. It was quite degrading actually; them asking me if I lived in a house with electricity, if I had tap water in the house, if I lived in an attap house or in a building with good sewage system. At first I found that strange ... and insulting. Of course I did! I have always had electricity and tap water in my house for as long as I could remember. But then, when I first visited my in-laws, ironically that was the first question one of his aunts asked me ... if I had electricity and tap water in my house ... but for another reason. They had then only just got electricity supply into their homes and still had to use well water for drink and bathing. What I had taken for granted was a luxury only some could afford at that time. So, I guess the doctors in Salford Royal Hospital had reasons to question me that extensively.
It felt strange to be in a ward where all around me were English; foreigners ... or was I the foreigner? Strangely, that was the first time I had ever been hospitalised. When I prepared myself for prayers, I could feel all eyes on me. One of the ladies was kind enough to talk to me, and she was shocked to learn that I could speak English quite decently. She was even more shocked to hear that I had told the doctor that I never had a boyfriend nor slept with anyone at 22. That was how I escaped the VE by the doctor. Thank God the doctor respected my status at that time.
The next day I was taken to the radiology department for my first renal biopsy (later to be repeated in Malaysia). I had been told to fast prior to the procedure. And once again, I am thankful to the doctor/radiologist for taking the time to explain the procedure in detail to me. I was then made to lie down on my front, not after I changed into the hospital gown.
The room was warm enough, but I could feel myself shivering – probably more from fear than the cold. Even though I understood what the radiologist had said, but to imagine the needle piercing my back and right into my kidney was something to contend with.
All embarrassment aside when I felt the doctor gave a shot of the anaesthesia on my back. Boy! Did that hurt....and then it was a numb sensation. Then the doctor told me to breathe in and hold my breath, and I could hear a slight thud when the needle pierced my back into my abdomen. At first I could not feel anything much, but after 3 or 4 tries, I could sense a blunt aching on my back and it was getting more difficult to hold my breath longer.
Procedure completed, I was sent back to my bed, the furthest in the ward, and continued to lie down on my front for the next almost 24 hours. A really uncomfortable experience I must say. Thankfully, I have this life saving mechanism that whenever it becomes inconvenient to use the toilet, I don’t feel like going to the toilet. But, as the anaesthesia wore off, the back pain became quite unbearable. It felt like I was stabbed by a knife, so much so I had to request for a painkiller. It was all I could do to stop myself from crying – from self pity I guess, being subjected to this kind of treatment ... all alone ...so far away from home. Prayers were only offered by “niat”; no ablution, but just by respecting the prayer times. I wonder why, none of my friends came to visit; they could have helped me make the wuduk. Perhaps everyone was busy with the upcoming finals. (see appendix on renal biopsy)
The next day, when I was more mobile, I decided to join the other patients at the ward lounge watching TV and listening to the older ladies chitchat. It was a comforting feeling, to know that I was being accepted by them, and that they all had kind encouraging words to give me even though I was foreign to them. I guess illness brings people together.
And I am reminded of the words of God in Sura Rom:
”And among His Signs is the creation of the heavens and the earth, and the difference of your languages and colours. Verily, in that are indeed signs for men of sound knowledge.” 30:22
I have gone through the whole procedure – the endless blood tests, the urine tests, the CAT Scan, the renal biopsy. Most of the tests were inconclusive, but one thing was for sure – both my kidneys were diseased, and the basic cells – the nephrons were damaged. I had glomerulonephritis. The prognosis was not good.


(c) norhafizah manaf