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Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

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ANAK adalah harta yang tidak ternilai terutama sekali bagi seorang ibu yang mengandungkannya selama sembilan bulan.

Maka tidak hairanlah apabila wanita ini diberitahu bahawa anaknya sudah ‘tidak mempunyai banyak masa’, hati Nur Sarini Abd Rahim, 37, diibaratkan retak menanti belah.

Paragraf 2

Berkongsi kisahnya bersama mStar, Nur Sarini berkata anak sulungnya Nuraisyah Amani Mohammad Suherman,11, atau lebih mesra dipanggil Ecah menghidap penyakit jantung kongenital atau kecacatan pada struktur jantung.

Kesan daripada penyakit tersebut, beberapa bahagian pada tubuh Ecah khususnya bibir dan kuku menjadi kebiruan manakala bawah matanya menjadi gelap disebabkan kekurangan oksigen.

Menurut Nur Sarini, masalah yang dihadapi anaknya itu mula dikesan selepas beberapa hari dia dilahirkan.

“Masa mengandung scan semua okay, lepas bersalin pun doktor check bacaan semua bagus tapi selepas dua hari dia kena kuning.

“Masa tu nurse datang ke rumah untuk check, dia cadangkan bawa anak pergi ke Klinik Kesihatan Puchong sebab masa tu saya duduk dekat Serdang. Di sanalah medical assistant yang periksa Ecah cakap pernafasannya bunyi tak normal.

“Tapi mungkin dia nak sedapkaan hati saya dia cakap ini lubang kecil je, jangan risau Ecah masih kecil InsyaAllah akan tertutup cepat,” katanya.

Doktor yang check tu kata mintak maaf paling lama anak puan boleh tahan dua bulan je.

Hanya ada dua bulan untuk hidup

Nur Sarini berkata anaknya kemudiannya dirujuk ke Hospital Serdang.

“Masa scan doktor kata tak sukar untuk kenal pasti masalah sebab memang dah nampak banyak sangat kelainan pada jantung Ecah. Jadi Ecah terus dibawa naik ambulans dan dihantar ke Institut Jantung Negara (IJN),” katanya.

Di IJN jugalah, Nur Sarini dan keluarganya menerima perkhabaran duka bahawa zuriat yang dia serta suami nanti-nantikan selama setahun itu hanya mempunyai masa sekitar dua bulan untuk hidup.

“IJN sahkan masalah jantung anak saya, lepas tu doktor minta maaf sebab dia ramal paling lama Ecah boleh bertahan dua bulan je. Saya faham IJN dah biasa tengok kes-kes macam ni, jadi mereka boleh agak pengakhirannya macam mana.

“Bila fikir tempoh dua bulan lebih baik saya bawa Ecah balik dan luangkan masa dengannya,” katanya yang kini menetap di Putrajaya.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Doktor pada mulanya menjangkakan Ecah hanya boleh bertahan selama dua bulan selepas kelahirannya.

Ecah masih kuat

Hari-berganti hari, bulan berganti bulan, Ecah seakan-akan kuat semangat dan berkat doa ibu bapa serta keluarganya, dia melepasi tempoh dua bulan tersebut.

“Masa doktor kata dua bulan memang hari-hari menangis fikir Ya Allah macam mana aku nak lepaskan anak aku yang montel dan comel sangat ni.

“Mula-mula follow up Ecah seminggu sekali, makin lama makin panjang, dua minggu, lepas tu sebulan sekali, masa bulan ketujuh doktor tengok dia macam sihat, tak macam bayi yang ada sakit jantung.

“Tapi lepas tujuh bulan dah nampak ada biru sikit… bila menyusu Ecah berpeluh lepas tu bibir jadi biru tapi masa tu bukan biru gelap,” katanya.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Nur Sarini terpaksa dukung Ecah yang kini cepat penat.

Kegagalan jantung

Menurut Nur Sarini, dia dimaklumkan bahawa ia adalah simptom-simptom kegagalan jantung dan petanda bahawa sudah tiba masanya untuk anaknya itu melakukan pembedahan.

Terdapat tiga pembedahan utama yang Ecah perlu jalani iaitu Blalock-Taussig (BT) Shunt (untuk bantu peredaran darah ke paru-paru), Bidirectional Glenn Shunt (untuk meningkatkan fungsi jantung secara sementara) dan Fontan (untuk membantu peredaran darah dari bahagian bawah badan ke paru-paru).

Memandangkan keadaan Ecah ketika berusia satu hingga tujuh bulan adalah baik, dia tidak perlu menjalani pembedahan BT Shunt.

“Dia terus buat Bidirectional Glenn Shunt. Masa tu memang kritikal sangat, bayangkan doktor kata pembedahan akan ambil masa tiga jam tapi anak saya masuk dewan bedah dari 7.30 pagi sampai Maghrib. Hari tu memang tak ada pembedahan lain, dia seorang saja sebab keadaannya yang terlampau banyak komplikasi.

“Lepas pembedahan doktor suruh kami datang tengok anak, keadaan dia memang menyedihkan dengan wayar berselirat dan masa kami tengah melawat tu tiba-tiba graf bacaan dia menurun.

“Masa tu doktor nak buka balik jahitan di dada Ecah dekat situ juga, dia minta kami ke bilik sebelah. Boleh nampak doktor tarik semua perkakas dan buka semula bahagian dada anak saya… tak sempat masuk dewan bedah,” katanya sambil menambah kesan jahitan di dada anaknya terpaksa dibuka semula akibat pendarahan.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Mimpi ngeri belum berakhir

Lima hari kemudian, keadaan Ecah semakin stabil, namun mimpi ngeri Nur Sarini masih belum berakhir.

“Masa tu saya bersyukur dapat balik anak saya, doktor pun kata nak exturbate dan tukar kepada mesin biasa tapi bila doktor cuba buka alat bantuan pernafasan anak saya tak boleh bernafas dengan baik, oksigen rendah sangat.

“Bila scan, doktor kata diaphragm (otot utama) dia lumpuh sebelah, jadi paru-paru kanan tak boleh kembang hanya sebelah paru-paru berfungsi sebab tu tahap oksigen rendah.

“Doktor kata minta maaf puan kita terpaksa operation semula, doktor nak buka semula dada dia kali ketiga supaya boleh ikat diaphragm kiri dengan kanan untuk membolehkan paru-parunya berfungsi,” katanya.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Hospital sudah menjadi rumah kedua Ecah sejak hari dia dilahirkan.

Pembedahan tersebut akhirnya berjaya dan Ecah boleh meneruskan kehidupannya seperti biasa sehinggalah usianya mencecah empat tahun.

“Sampai empat tahun keadaannya baik, kalau biru pun mild sahaja, tapi memang doktor dah jadualkan untuk buat pembedahan yang ketiga iaitu Fontan sebab doktor kata fungsinya masih bagus, jantung masih kuat… kira itu waktu paling sesuai untuk buat pembedahan tersebut.

“Tapi kami masa tu masih trauma dengan situasi selepas pembedahan sebelum ni jadi kami tolak, kami cakap tak pe la kalau jadi apa-apa pun tak apa, sebab kami dah selesa dengan dia,” katanya.

Kesihatan mula merosot

Namun menurut Nur Sarini, keputusan itu salah dan keadaan kesihatan anaknya semakin merosot.

“Betul apa doktor cakap, bila badan makin besar, pembedahan Bidirectional Glenn Shunt yang dah dibuat cuma untuk sementara saja, sekarang bila Ecah makin tinggi, makin membesar, setiap pagi selepas bangun tidur matanya bengkak dan cepat penat,” katanya.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Kesihatan Ecah semakin merosot setelah dia berusia empat tahun.

Menjalani kehidupan normal

Nur Sariani berkata walaupun keadaan kesihatan Ecah kurang memberangsangkan, dia tidak melayan anaknya seperti kanak-kanak yang mengalami sakit jantung.

“Saya anggap dia normal, saya hantar dia pergi sekolah tapi saya pesan pada cikgu dia tak boleh buat aktiviti fizikal, malah masa masuk sekolah rendah dia masuk kelas biasa dari darjah satu hingga darjah tiga.

“Memang saya berusaha carikan sekolah yang ada lif sebab dia pun memang suka pergi sekolah. Dia suka jumpa kawan-kawan, tapi bila lif sekolah rosak keadaannya makin teruk.

“Setiap kali balik sekolah beberapa bahagian badan akan jadi biru,” katanya.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Ecah sangat suka ke sekolah terutama sekali untuk berjumpa dengan sahabatnya.

Tiada lagi harapan

Pada pertengahan 2020, doktor mencadangkan Ecah melakukan Ekokardiogram bagi melihat sama ada jantungnya masih sesuai untuk melakukan pembedahan Fontan.

“Masa buat Ekokardiogram doktor kata fungsi jantungnya dah sangat merosot, dah tak ada native treatment yang sesuai dan hanya sesuai diberikan penjagaan untuk pesakit yang sudah tak ada harapan,” katanya.

Menurut Nur Sarini doktor mengeluarkan satu surat bagi membolehkan dia memohon kad orang kurang upaya untuk Ecah.

“Bila dapat surat tu dia boleh masuk kelas pendidikan khas jadi kelas dekat bawah sahaja.

“Dia tak perlu lagi buat aktiviti fizikal macam naik turun tangga yang hanya akan menyebabkan fungsi jantungnya merosot.

“Masa jumpa doktor bulan Februari baru-baru ni, doktor pun dah nak rujuk saya ke bahagian psikologi untuk persediaan saya menghadapi ketiadaan Ecah,” katanya.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Sudah tidak ada native treatment yang sesuai untuk Ecah justeru dia hanya diberikan palliative care.

Menurut Nur Sarini, walaupun Ecah kini masih boleh berjalan, dia dimaklumkan bahawa keadaan fizikal anaknya itu akan merosot perlahan-lahan sehingga sampai masa untuk dia ‘pergi’.

Doktor kata fungsi jantung dia dah sangat merosot, dah tak ada native treatment yang sesuai untuk dia, cuma boleh bagi penjagaan untuk pesakit yang sudah tak ada harapan.

Ingin cipta sebanyak mungkin kenangan

Kini tiada apa yang lebih penting bagi Nur Sarini selain meluangkan masa sebanyak mungkin bersama anaknya itu, serta mencipta memori-memori indah untuk dikenang suatu masa nanti.

“Kalau tengok media sosial saya semua saya cerita yang seronok-seronok, orang tengok dia ni suka sangat check-in hotel, bercuti sana sini tapi orang tak tahu saya nak cipta memori sebab saya tak tahu ada masa dengan dia sampai bila.

“Sekarang saya nak cari duit banyak-banyak nak gembirakan dia, hari-hari balik sekolah saya akan tanya dia nak makan apa. Dia nak sushi, ais krim Baskin Robbin dan macam-macam lagi… orang nampak kita mewah tapi mereka tak tahu sampai bila Ecah dapat bertahan,” katanya.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Nur Sarini kini berusaha untuk mencipta sebanyak mungkin memori dengan Ecah.

Malah menurut Nur Sarini, setiap hari selepas mengambil anaknya pulang dari sekolah, dia akan membawa anaknya ke pejabat untuk meluangkan masa berdua.

“Selama lima tahun dia bersekolah hari-hari saya bawa dia ke pejabat lepas sekolah, saya minta jasa baik bos sementara anak saya masih ada.

“Selalunya masa inilah saya boleh tengok dia baca Iqra, boleh layan dia tanpa gangguan adik-adik,” katanya.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Nur Sarini akan bawa anaknya ke pejabat setiap hari.

Harapan seorang ibu

Harapannya kini hanya satu iaitu untuk melihat anaknya itu sihat dan dipanjangkan usia.

Menurut Nur Sarini, dia pernah kehilangan dua anak lelaki yang dilahirkan tidak cukup bulan pada tahun 2015 dan 2016.

“Saya tak ada harapan lain, saya tak fikir nak kaya, saya nak cari rezeki dan nak penuhi semua kehendak dia.

“Saya dah pulih dari sakit jiwa hilang dua anak lelaki dan kemudian dah dapat anak perempuan.

“Saya tahu untuk dia sembuh sepenuhnya itu mustahil, tapi cukuplah kalau dia sihat dengan cara dia, boleh enjoy dan kami dapat luangkan masa sekeluarga,” katanya.

Bayi Baru Lahir Diramal Mampu Hidup 2 Bulan Kini Dah Umur 11 Tahun, Ibu Tabah Tunggu Detik Anak ‘Pergi’ Sambil Cipta Memori, Doktor Kata Tiada Harapan

Harapan Nur Sarini hanya satu iaitu untuk melihat anaknya sihat dan dipanjangkan umur.

Nur Sariani yang bekerja sebagai seorang programmer berkata dia juga menceburi bidang perniagaan bagi mencari pendapatan tambahan untuk memenuhi permintaan anaknya itu.

“Saya buat Sumosauna tu sebab nak cari duit lebih sebab nak bawa dia jalan-jalan, belikan dia apa sahaja yang dia teringin.

“Selain tu, saya juga takut seandainya satu hari nanti saya perlu berhenti kerja untuk jaga dia, jadi sekurang-kurangnya saya ada sumber pendapatan lain untuk menyara kami empat beranak,” katanya.

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