Utusan Online - Mingguan Malaysia

ARKIB : 22/11/2009
Nabila mutiara hatiku - Hjh Rohana Abdul Razak

Oleh RABIATUL ADAWIYAH KOH ABDULLAH ( )
adawiyah.koh@utusan.com.my


BERAT mata memandang, berat lagi bahu memikul, setiap kejadian Allah bersebab, saya reda apa yang berlaku," itulah kata seorang ibu, Hjh Rohana Abdul Razak membesarkan anaknya yang bukan sahaja menghidap sindrom down malah disahkan menderita Atrioventricular Septal Defect (AVSD) iaitu penyakit jantung kongenital kompleks dan beberapa komplikasi yang lain.

Seperti satu keajaiban, Hjh Rohana  berjaya mendidik anaknya, Nabila Abd Raes seperti kanak-kanak normal lain. Kesempatan menjamu selera bersama Nabila mengubah persepsi tentang golongan sindrom down. Seperti kanak-kanak normal lain, dia mampu makan dengan tertib. Percakapan dan tingkah lakunya juga sopan dan berbudi bahasa. Terdetik di hati, ini mungkin keajaiban Tuhan. Pengorbanan Hjh Rohana membesarkan anaknya, Nabila tidak ternilai. Kekuatan ini perlu menjadi contoh kepada masyarakat. Yang pasti Hjh Rohana  tidak pernah menyisihkan anaknya Nabila, ke mana sahaja Hjh Rohana pergi Nabila akan dibawanya bersama. Pada 27 Mac yang lalu, Nabila telah selamat dibedah dan pembetulan kepada setiap lubang dan injapnya telah di baik pulih oleh pakar Institut Jantung Negara (IJN).

"Apa yang mampu saya lakukan ialah reda dan supaya Allah memberikan saya kekuatan melalui detik cemas dengan tabah. Di dalam minda saya, saya gambarkan keindahan yang akan saya lalui bersama Nabila dan keluarga saya yang lain. Kini, saya seronok melihat dia bermain solekan sendiri, mewarna dan kadang kala menyanyi dengan bahasanya tersendiri," katanya.

Buat masa ini, Hjh Rohana berfikir untuk memberi latihan vokasional, mungkin Nabila boleh mengambil bidang kecantikan. Siapa tahu Nabila boleh menjadi anak sindrom down yang pertama di bidang kemahiran kecantikan. 

"Kehadiran Nabila memberikan saya satu kekuatan untuk sabar, bersikap terbuka, berfikiran positif dan yakin diri, kehadiran Nabila anak istimewa yang teristimewa. Dia ialah mutiara hatiku," bicaranya dalam keadaan sebak.

Mengimbas kisah 13 tahun lalu, dua minggu sebelum Nabila lahir, Hjh Rohana sudah dimaklumkan tentang keadaan anaknya.

Ketika itu, dia berazam ingin menjadikan anaknya paling istimewa. Risau dan bimbang keadaan anaknya pada masa depan, membuatkan Nabila menangis.

"Pada hari kedua dilahirkan, Nabila dipindahkan ke Pusat Perubatan Universiti Malaya untuk menjalani pembedahan kolostomi ke atas ususnya.

Tiga minggu selepas pembedahan membentuk lubang pembuangan najis, saya diberitahu oleh doktor bahawa Nabila turut menghidap penyakit jantung kongenital atau jantung berlubang. Setelah berusaha, kami berjaya mendapatkan khidmat kepakarannya. Kemudian, Nabila mula menjalani siri pembedahan jantung seawal usianya tujuh bulan lagi," katanya.

Dugaan ini tidak pernah mematahkan semangat Hjh Rohana sekeluarga. Melihat Nabila yang berjuang untuk terus hidup, Hjh Rohana kuatkan semangat.

Berkongsi teladan dengan pembaca, Hjh Rohana berpendapat setiap ibu bapa perlu diberi didikan untuk menjaga anak sindrom down.

"Dulu, saya panik ketika kuku Nabila yang masih bayi menjadi kebiruan secara tiba-tiba. Mungkin saya bernasib baik kerana tahu menggunakan internet. Saya mula mendapatkan maklumat tentang sindrom down melalui internet. Tetapi bagaimana dengan mereka yang tiada asas internet? Saya harap dengan adanya perkongsian kisah saya dan Nabila dapat membantu masyarakat di luar sana," ujarnya yang banyak menerima sokongan daripada keluarga.

Tambahnya, pengetahuan tentang anak abnormal perlu didedahkan ketika mengandung lagi dan sebelum melahirkan anak.

Setiap keluarga jangan menyerah kepada takdir tetapi perlu bertindak untuk berdepan dengan keadaan ini.

"Sebelum pembedahan jantungnya, selama 12 tahun Nabila tidak fokus pada pembelajaran. Tetapi saya tidak lupa mengajarnya tentang latihan asasi seperti makan dan penggunaan tandas. Maklumat itu saya perolehi daripada internet. Bagi suri rumah tangga, kumpulan sokongan sangat penting. Melalui persatuan, ceramah, dan bengkel, mereka akan mendapat maklumat. Siapa kata anak sindrom down sukar dibentuk? Semuanya perlu usaha ibu dan bapa itu sendiri," ujarnya.

Atas kesedaran membantu masyarakat, Hjh Rohana dan suami menubuhkan syarikat BNR Global untuk memberi bimbingan melalui kumpulan-kumpulan sokongan.

"Ramai ibu-ibu tidak arif tentang menjaga anak kurang upaya dan banyak maklumat tidak fokus kepentingan anak-anak. Misalnya, di Urban Ethos Consultancy membantu peningkatan pembelajaran Nabila seperti pertuturan. Selain bersekolah di kelas pendidikan khas di Sekolah Kebangsaan Seksyen 20, Shah Alam, Nabila kini boleh memperbaiki kemahiran yang dia ada," katanya. Sementara itu, Hjh Rohana mengalu-alukan orang ramai membantu Yayasan Institut Jantung Negara (IJN) dengan menghubungi talian 03-26006219 . Bagi mereka yang berminat untuk menyertai seminar BNR Global bolehlah menghubungi Hjh Rohana di bnrglobal@gmail.com

Give Me A Chance in the aid of IJN Foundation organised by BNR Global

IJN Foundation believe in a continuous effort of fund raising and creating awareness :- 1. To raise funds in aid of poor and needy pediatric heart patients in meeting the costs of heart operations. 2. To raise awareness in the community of the various related aspects of pediatric heart patients care. 3. To create sharing and caring attitudes among the community for the pediatric (children and babies) poor and needy heart patients of IJN. Give Me A Chance” aim to create an awareness especially to public, parents to be and parents with :- * Infant and children that was born with a down’s syndrome disabilities that usually diagnosed with a complexity of congenital heart disease in several stages. * Infant and children that was diagnosed with a complexity of congenital heart disease but come from a very poor family background. “GIVE ME A CHANCE” FUNDRAISING SEMINAR in aid of IJN Foundation DATE : 7th November 2009 (Saturday) TIME : 9.00am – 4.30pm VENUE : IJN Auditorium, 145 Jalan Tun Razak, 50400 Kuala Lumpur TARGETTED AUDIENCE : * Parents * Teachers/Educators * Hospital Administrators * Down Syndrome Associations PARTICIPATION FEE : RM120 per participant 10% discount for IJN Foundation members RM100 for group of 5 and above RM100 for Early Bird – on or before 15 October 2009 PROGRAMME 8.30am – 9.00am : Registration of Participants & Refreshments 9.00am – 9.30am : Heart Disease Among Children Dr Nomee Mohd Radzi Consultant Paediatric Cardiologist Institut Jantung Negara 9.30am – 10.00am : Opening Ceremony YABhg Toh Puan Dato’ Seri Dr Hajjah Aishah Ong Chairman IJN Foundation 10.00am – 10.30am : “A Mother’s Sharing” Hajjah Rohana  binti Hj Abdul Razak 10.30am – 11.30am : “I am a Special Child” Dr. Fauzi Ismail Paediatric Psychiatrist Hospital Kuala Lumpur 11.30am – 12.15pm : “Development & Care for Special Child – Achieving a Child’s Potential” Dr. Norizan binti Razak, PhD Director & Consulting Linguist - Urbane Ethos Consultancy Group 12.15pm – 2.00pm : LUNCH 2.00pm – 2.15pm : Special Performance by Children 2.15pm – 3.00pm : Junior eXtraDICTION® Demonstration Facilitator – Encik Soh Wee Hock Chief Designer and Dreamer of Ed-Infinitum (M) Sdn Bhd 3.00pm – 4.00pm : Cane Rejuvenation Exercise Programme Facilitators – Encik Yong Yew Tuck & Dato’ Yee Weng Loon 4.00pm – 5.00pm : TEA & END OF PROGRAMME

Hari Raya Celebration with a new heart

It is indeed a special hari raya for the whole family...thanks to the almighty...to give us the moment to celebrate 2009 hari raya in allowing us to see Nabila in her joyous Eid Mubarak with a healthy and a corrective done to her heart. For me its the greatness gift from allah swt...amin.

Nabila's Diaries - Allah blessed her......

How should I start, it took me four months to update this moment, it was kind of traumatic moment for me...but I will keep it posted for others to read....Hope IJN don't mind I shared this pictures of Nabila, reason being at least I create some awareness. Nabila was addmitted on the 23rd March 2009 at 2.00 pm at Institut Jantung Negara.




As usual she looks like she is going for a relaxing hotel stay...although I kept her informed that she will have an open heart surgery "Mama nak Nabila sihat...tak biru-biru, Nabila kena kuat, doktor belah kat sini...sakit sikit je...Nabila nak sihat kan" means mama wants you to be healthy and strong, the doctor will do it here by showing exactly where the scare will be, just a slight pain, you want to be healthy aren't you she will then repeat "sakit sikit je" means very slight pain, each time she says that I will hug her, trying my level best and hold back my tears....I kept on repeating the lines everyday....and keep saying it will be alright....



Good about IJN or maybe thats the normal way to have an induction program for every heart patient that will go for surgery...what do and don't before and after each operation...

In this pictures she was browsing the IJN pamphlet....she acted as though she can read that's her she will show her interest in reading and viewing.....



Look at her I believe if she is normal, she will be an intelligent girl,but she is in her own intelligency, never she will make herself wasting time....you can see books, drawing and coloring block will always with her....



This picture was taken on the 25th March 2009,the nurses pushed nabila to the CC theater, the day that a cardiac cath was done...Cardiac catheterization (heart cath) is the insertion of a catheter into a chamber or vessel of the heart. This is done for both investigational and interventional purposes. http://en.wikipedia.org/wiki/Cardiac_catheterization.

Alhamdulillah everything when well, after the CC I was called and the MO told me that they might do the operation on Thursday, 26th March 2009 instead Friday, 27th March 2009....and Nabila was asked to start fasting from midnight onwards, well I felt a little confused and scared....in my tahajud that night I told allah "oh allah I whisper in my heart "give the best and bless her, you have given me the chance for almost 13 years to look, love and care for her....and now I am returning it to you allah...you know what best for her...as a care taker and guardian to her I "redha"....I was crying my heart out...my positive thinking says that I need to be strong and I have gone this far...this is the choice that I have choose, in spite of many objection and ideas...for me no turning back...no regret....thanks to allah for the moment....At about 2pm on Thursday, the MO came and told me they cannot proceed because there's a delay from the first case....kinda relieved as I am a bit scared, my thinking does not telly with my intuition when they said that they wanted to do on Thursday, I am more comfortable if they want it to be done on Friday...that the strong feeling I had at that time....



27th March 2009, it was a Friday....a day of a "penghulu hari" a day start for a muslim week...as early as 6am I have woke her up...its a third day I have to gave her an antiseptic bath...when I reaches her chest I will remind her "doktor akan buat kat sini...nabilah tak perlu risau sakit sikit je...doktor bagi ubat..." means "the doctor will do it here and don't be afraid, its a slight pain and they will gave you medication" I cannot hide my sorrow I broke down and quickly hug her and usually she did not cry but that morning she cried, she cried and the words that came out from her was "mama maaf" means "forgive me mama"....how could I hold back my tears....I have been hiding it all this while but that morning it was the most difficult moment for a person by the name of "mama" to handle...nine months I conceived her and nearly thirteen years she is always by her side...make a choice to leave the job I love...its always a choice for a mother to do.....

Another test when she refused to cooperate to be transferred to the stretcher when the staff are ready to push her to the OT, she told me "Benci Mama" I hate you was a traumatized moment in my life, after kisses her, I adjourned myself without any of my immediate family notice, I cried at the staircase....she would not understand and I know that's her expression to say why you make me suffers, I could be wrong but alhamdulillah I know that's not what she wants to said or may be not but at least I managed to tell how I love here, no mother would ever want to make her children suffers....for me its a test that I really valued every moment in bringing her up.

A moment that I will never forget...after eight hours in the operation theater...exactly at about 5pm, I was told that the operation was successful done and she was transferred to the Intensive Care Unit....what a relieved and my "syukur, alhamdulillah" to Allah, I was with Mak Su my husband's auntie from Pulau Pinang at the ICU waiting lobby...My husband has to sent two of my eldest daughter back to UIA Gombak,that means I'm alone without my husband and other children...suddenly the ICU head of security called "Keluarga untuk Nabila Abdul Raes sila masuk ke ICU, pakar sedang menunggu" - the family of Nabila please come in the surgeon is waiting...

At that time suddenly I can't hardly stand, I felt shortness of breath...luckily Mak Su told me to be more calm...think of Allah...well I remembered how I walked very slow just to regained my strength...

When I saw her, I do not know what to do, whether I should cry...but I managed to make myself calm and yet I can sense that my mind and soul are in the air.... Mr Ahmad Khadri that assisted Mr KK Pau was there, he started to explained about what they had done to Nabila's heart...honest I can't even focused to what he said...


Four and a half days she was in the ICU, with many doa from us and others, with the supports from my immediate family, siblings, in laws and friends and not forgetting Ms Evelyn Ch'ng and her brother-in-law, Dato Yee who actually have sacrifices her time to come just to do healing for her. For me besides having my faith to Allah, I will never gave up hope to find other alternatives for Nabila for the benefits of her well being.





To see her open her eyes and to see one by one of those massive gadgets on her been removed, I am more relief....Thanks to Allah....Syukur.

What I gather from here, all the test that Allah showers us, is to make us a very strong person and value things that we have in front of us....Nabila herself is a fighter...She herself have her own strong will power...well its not easy for me thou to balance up myself with her moods, she have all sorts of deals and temper that really at times make me get confused what to do, here I will like to conveyed my sincere thanks to all her siblings who take turns to look after here during her stays in IJN.

My "sujud syukur" to Allah,as I believed every test or joy that Allah showers me, is an indication that Allah actually is so near to us and from this test makes us the family more closer to each other.....

NABILA you are always our precious pearl.....

My sincere gratitude to the almighty and to all......

It has been quite a while I have not been blogging any feedback about my precious pearl....today is exactly a month after Nabila has undergone her open heart surgery ...simply because before the op the whole family especially me need to foresee a lot of preparation...

Prof. Dr Asma Omar, Paeds Specialist Cardiologist from University of Malaya Medical Centre, UMMC. a lady with a strong character but kind at heart. Twice she told me not much can be done for Nabila....Nabila has been her patient since 2nd day of birth till todate, close to 13 years now....after doing my own findings and without losing hope to see Nabila gets her corrective I went to see her again in June 2008, after a year lapse without doing anything, just witness Nabila goes on getting weaker and weaker, deep inside me was to see her get her strength like any normal child. I believe if we have faith Allah will lead us the way.....it just happen at the right moment Prof. referred Nabila's case to IJN.....and this picture was taken when Nabila had her 1st check up on the 4th June 2009 with Prof. Dr Asma, two months after her Open Heart operations. What else can i say to this lady, through Allah wills this lady have extended her truely and sincere heart to help Nabila....thank you prof. for making all the arrangement for Nabila. Thank you and may allah bless you.



This pictures was taken with the IJN Specialist Heart surgeon Mr KK Pau, Dr Rohana a HO/MO, Dr Rohana from Ipoh Hospital, Wad Mawar Nursing Manager and a staff nurse....two weeks after her major operations....nabila are able to move around......



In this picture Nabila with Mr Ahmad Khadri, the day he dropped by to see Nabila, is the day that he joined a new team...He was the one who have given us the full explaination process and the consequences that will happen during the operation, he is the 2nd surgeon assisting Mr KK Pau. Im glad he is one of them during the whole process going on....a stupid thing that I remembered telling him "Doctor please recite quranic verses when you want to do it to Nabila"....he replied "insyaallah puan, I will and thats what I always do... and thats the moment I can't control or hold back my tears"

The only picture that I have not able to take is with Dr Haifa, IJN Paeds Cardiologist, cute and pretty lady. I will get it taken later.

My sincere thanks to all of you IJN team and wad staff....(I will continue later).

HAPPY BIRTHDAY TO MS EVELYN CH'NG

TO SOMEONE WHO HAVE WORKED AN EXTRA-MILES FOR THE NEEDS OF OTHERS - THANK YOU!





Dear Ms Evelyn Ch'ng happy birthday to you from All of us "Anna Raes" Family especially from Nabila....I believed you felt so touched when she wished you that morning right...she was so excited to pass you the card....all the way to Klang she kept on asking me to sing a birthday songs...thank you again....may you be blessed always.....


AGE IS JUST A NUMBER

Nabila's Diaries

I created many event just for her....I need to balance and take things one at a time. In fact every end of each day, I will ensure to plan what next and next...I wanted to gave her the best and not forgetting to keep my faith to Allah.






I am careful in planning for her, planning for her means I also have to take care of my health....March 27th, 2009 needs everyone at home to be strong and healthy,at times I neglected them and make sure Nabila gets all the care and love...to my other children...sorry dear I just cannot cope...and yet I still want everyone to be happy...Most of the time I did my own healing conversation just focus and look forward....and even making the networking going....to ensure doa and prayers are being extended for Nabila's well being.




My sincere thanks to IDC/Ms Helen Sheibt and staff, Ms Evelyn Ch'ng for a well planned seminar.

My heartiest gratitude to Sekolah Rendah Seksyen 20, Shah Alam where Nabila attended her special education for almost 7 years, to the parents and teachers group, the headmistress, Puan Hjh Norsima Saari, all teachers especially the PPKI teachers and student for their kind effort doa and token given to Nabila's operations. May Allah bless all of you.



Thank you to Hjh Nasiyah, founder and a care taker of Rumah Qiraati, Taman Melawati in organising a "Khatam Quran and a special event of Doa Selamat for Nabila" at KTSN Global, Taman Melawati and thanks to Hjh Kiah for a lovely place extended for this function.

To Ms Evelyn for arranging a three days healing session for Nabila when the Taiwan healing group came to Malaysia. For those who wonder what treatment is this, according to David Herron "Healing is not the popular conception of removal of symptoms. Healing is to recover a greater experience of unity with the divine harmony, and our true selves. Healing is returning to a state of alignment with your Higher Self or true way of being". It is a western medical science that has made Healing be thought of as the removal of symptoms".




Nabila has received the treatment since November 2008, and thank you to Dato Yee, Ms Evelyn's brother in law for his time coming to the house and did the healing for Nabila.

For Nabila she seems to enjoy every moment that I schedule for her.....