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Kisah Hiro, Bayi Terlahir dengan Moebius Syndrome: Tak Bisa Menangis, Tak Ada Ekspresi di Wajahnya

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Kisah Hiro, Bayi Terlahir dengan Moebius Syndrome: Tak Bisa Menangis, Tak Ada Ekspresi di Wajahnya

Kisah Hiro, Bayi Terlahir dengan Moebius Syndrome: Tak Bisa Menangis, Tak Ada Ekspresi di Wajahnya

Kisah Hiro, Bayi Terlahir dengan Moebius Syndrome: Tak Bisa Menangis, Tak Ada Ekspresi di Wajahnya


Seorang Psikiater Andreas Kurniawan membagikan kisah anaknya yang menderita Moebius Syndrome.

Moebius Syndrome tersebut mengakibatkan bayi laki-laki Andreas yang diberi nama Hiro tidak bisa menangis, tidak bernafas, bahkan tidak ada ekspresi diwajahnya.

Kisah itu dibagikan Andres melalui akun Twitter pribadinya, @ndreamon, Kamis (23/7/2020).

Soerang bayi ketika lahir akan dinilai kemampuannya menangis, namun Hiro yang lahir pada 27 Juni 2020 lalu tidak bisa menangis.

Hiro tak bisa membuka mulut, bahkan mungkin hanya bisa membuka sebesar sedotan air mineral.

Selang makan perlu dipasang, begitu pun dengan selang oksigen di hidungnya.

Andreas menjelaskan, Moebius Syndrome adalah kondisi ketika seorang bayi lahir dengan masalah pada saraf kranial VI dan VII, itu merupakan saraf yang membuat wajah bisa bergerak. Psikiater Andreas Kurniawan membagikan kisah anaknya yang menderita Moebius Syndrome.

Akibatnya, anak dengan Moebius Syndrome matanya tidak dapat melirik ke luar, dan wajahnya tidak bisa berekspresi.

Tak hanya itu, Hiro juga mengalami masalah saraf kranial X, fungsi menelan.

Ketidakmampuan menelan ini membuat Hiro mengalami banyak kesulitan, satu di antaranya tidak bisa makan.

Bahayanya, air liur tidak bisa tertelan dan jadi jatuh bebas ke saluran napas, aeperti tersedak saat makan sambil bicara.

Dalam kasus ini, Hiro menjadi mudah tersedak.

"Karena Hiro spesial, masalahnya belum selesai sampai situ. Hiro juga tidak memiliki refleks batuk yang baik. Jadi ketika air liur masuk saluran napas, dia tidak batuk.

Padahal, batuk itu perlindungan dasar manusia terhadap benda asing di saluran nafas," tulis Andreas.

Bahkan, ketika susu atau makanan masuk paru, Hiro tidak bisa batuk, tiba-tiba sesak dan napasnya bunyi.

"Bagi Hiro, setiap makan adalah aktivitas yang bisa menyebabkan kematian.

Saat ini dia makan 8 kali sehari, jadi sesering itu risiko untuk tersedak, sesak, bahkan meninggal," tulisnya.

Untuk memastikan Hiro tetap bernapas dengan baik, dia memiliki trakeostomi di lehernya, putra Andreas itu bernapas lewat leher.

Saat dikonfirmasi, Andreas mengatakan, ia pertama kali mengetahui kondisi anaknya itu di hari kedua kelahiran Hiro, setelah ada dokter yang melihat dan mencari gejalanya yang sesuai dengan kondisi saat ini.

Pria asal Bekasi tersebut mengaku terkejut saat mengetahui buah hatinya mengidap kondisi langka.

Pasalnya, saat kehamilan sang istri, kondisi kandungannya sangat baik dan tidak ada hal-hal yang aneh.

"Kondisinya baik-baik saja, Karena memang kondisinya sulit dinilai dari USG."

"Ekspresi wajah, gerakan mata, kan sulit ya. Makanya bener-benar surprise," kata Andreas kepada, Jumat (24/7/2020).

Pada 27 Juni 2020, sang istri yang semula direncanakan melahirkan normal, harus menjalani operasi caesar.

"Awalnya rencana normal tapi karena kondisi bayi tidak turun, akhirnya caesar secara darurat," jelasnya.

Kendati demikian, Andreas mengungkapkan, bahwa kelahiran Hiro mengajarkan banyak hal dalam hidupnya dan sang istri.

Yakni tentang penerimaan, melewati rasa sakit dan sebuah harapan.

"Perjalanan Hiro masih panjang bersama kami. Tapi kami percaya bahwa tiap orang yang ada dalam hidup kita tidak akan tinggal selamanya.

Beberapa orang mampir untuk mengajarkan sesuatu dan akan pergi kalau sudah selesai memberikan pelajaran.

Bagaimana dengan Hiro? Hiro masih menjadi guru kami. Dia masih mengajarkan banyak hal pada kami.

Tapi kami harus siap dan rela ketika pelajarannya selesai. Bisa malam ini, bisa besok, bisa 10 tahun, bahkan 60 tahun dari sekarang.

Pelajaran terakhir topiknya jelas, merelakan. Letting go," tulis Andreas di akun Twitter pribadinya.

( Lusiana)
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