Congenital Scoliosis Hemivertebra Excision Part 2

How Aisha's Spine Looks Like (Image from google).
The 2nd one : Complete unilateral failure of formation.

Image from google

Fortunately Aisha has all her lumbar bones. That means there was one extra piece of bone? What a bless? Because of that hemivertebra, her spine could not grow normally and would affect other organs development as she grows.

Even though I knew that:

"Congenital scoliosis is a sideways curvature of the spine that is caused by a defect that was present at birth. It occurs in only 1 in 10,000 newborns and is much less common than the type of scoliosis that begins in adolescence"

But deep in my heart I always asked myself what did i do wrong? What did i took during pregnancy? Something I ate? Any external factor? Supplement? Age factor maybe?
Dr said it just random. Just being 'lucky' to be selected by Allah SAW. As Muslim we redho and believe there are always something good behind the worst situation.

One more thing: No Insurance would cover for congenital sickness. Yeah....The operation cost was very expensive. Yes even though it is a government hospital, we are not government servants so we had to pay by ourselves. I think government servants still has to pay but will get discount. What we were paying (that costs so high) was to the supplier. For the hospital services,  there would be some charges but it was very small compared to if you chose private hospital.

Image from Pinterest

There are four types of scoliosis. The common one is idiopathic scoliosis. You must be aware of your spine curvature or your kids alignment. Please be alert. For CS, only operation is an option.

Congenital Scoliosis Hemivertebra Excision Part 2 BM (coming soon)

Congenital Scoliosis Hemivertebra Excision Part 1

Aisha and congenital scoliosis BM

Congenital Scoliosis Hemivertebra Excision

History, how do we knew/detected it in the first place.

It was in 2015 my daughter was just 4 months old. My husband felt something like a lump at the below back/spine (lumbar area). I was frantically worried at that time. What was is? Tumor? Cancerous? Something bit her? The lump was hard just beside the back bone. I was optimistic the lump would go away.
It wouldn't go away! So we decided to visit pediatrician at private hospital. They did x-ray and MRI scan. Doc said there was a mass at the spine. He said this case was not his specialty and advised us and also referred us to general hospital. We were in Kulim at that time. So we went to Penang General Hospital. There were specialist(s) in child spine there who turned out to be our neighbor (one of). He is a 'datuk' very kind and humble guy.
Aisha was just a baby at that time so the doctor just monitoring her every 4 months. If she could move by herself, started to turn? able to crawl? able to sit? walk? Just monitoring the phases. Alhamdulillah she progressed normally. Like not affected by 'it'. Sometimes I forgot about 'it'. Whenever I remember the possibilities of what could happen? I cried. I tried my best not to overthinking.

2016, we moved to the city in Selangor so we referred her case to local hospital here. Just normal follow up. Until early 2018 she was 3 years old docs asked her to undergo ultrasound to find out if any of her internal organs affected. Alhamdulillah everything worked normal as normal kids. Even though I thought her belly was a bit bloated. No issues, just gasses.

Then we went though CT Scan and MRI to find out if operation intervention is possible.
She has to be warded, sedated for that.

Alhamdulillah during the next meeting with doctor in HKL, they said they were able to remove the wedge but need to secure the spine with screws and she has to be in cast for about 6 months.

I was not sure my feeling after that outcome. I hope that she would not got through any operation. How ever I did feel relieved that the wedge was (quite) far from the nerve and the complications and risks were minimal. Only the risk of infections were to be worried.

Aishastory dalam BM

Aisha and congenital scoliosis

Assalamualaikum kesayangan semua...
Seperti yang kawan2 semua maklum, anak akak yang bongsu si comel Aisha (sekarang 2018 dia 3 tahun) ada scoliosis yang terjadi di dalam kandungan (awal2 mengandung)....dipanggil congenital scoliosis....kami dapat kesan pada usia dia 4 bulan...time tu tahun 2015.
Nak tahu apa itu Congenital Scoliosis sila lah tanya encik Gugle...kira macam terpilih la sebab terjadi 1 dalam 10,000 kelahiran....ianya bukan keturunan hanya kebarangkalian.
Sedih tak? Sedih sangat...

Semasa agah-agah baby, husband akak terperasan ada benjolan pada pinggang. Terus dia bagitahu akak... Akak ingat biasa saja...tapi benjolan tu tak hilang hati mula tak keruan time tuu...tak boleh fikir benda lain. Takut ketumbuhan. Takutnya time tu. Takut sangat.

Lepas tu kami pi check kat private di Seberang Perai (time tu masih di kulim) dr suruh buat mri dan x-ray, (insuran cover time tu) seharian kami di hospital. Lepas dapat result tu, dr kata bukan kepakaran dia dan dia refer ke Hospital Pulau Pinang...al makanya bermula lah kisah follow up.
Di HBPP rupanya dr yang pakar tulang kanak2 tu jiran kami satu taman....huk huk...lawak pun ada time tu. Aisha masih baby memang tak banyak yang boleh buat, so depa suruh follow up jelah every 6 months.
Sempat follow up 2 kali, husband akak dapat job baru di KL, so kami minta refer ke KL...
Sampai sini lama juga baru nak ke hosp balik, dah due banyak bulan. Patut pegi bulan 6, akak pegi bulan 1 tahun baru 2016... tu pun tak pegi HKL, pegi putrajaya...dapatla follow up 2 kali juga lepas tu doc kata mereka lebih kepada scoliosis dewasa, di HKL ada specialist tulang scoliosis kanak2....Owh....kalau tahu awal2 dah pegi HKL tu...

HKL kan hospital terbaik Malaysia...(cewahh) esp kanak2.

So al-kisahnya lepas beberapa bulan (lama juga skip sampai rasa risau) pergilah ke HKL bahagian ortopedik berserta surat rujukan...(takde surat diaorang tak layan ye). Bukan boleh terus terjah ye.
So oleh sebab dah lama tak scan (xray) terus sister situ suruh x-ray. Selalunya kena tunggu arahan dr baru buat. Sister tu kata, x-ray dulu nanti dia bagi pada bos dia. Lepas tu dia akan call untuk appointment. Time tu bulan 7 patut pergi as soon as refered from Putrajaya. Dia tengok2 tarikh appointment semua penuh sampai bulan 12....haaaa. Dia kata takpe nanti i selit di mana2. Alhamdulillah syukur sangat jumpa sister baik. Ingat lagi nama dia....
Dah settle semua. Diaorang call appointment bulan 12 tahun 2016.

Masa appointment tu, dapat lihatlah pelbagai penyakit tulang yang dihidapi oleh anak2 lain. Yang mana scoliosis ada juga yang akak tegur dan buat kawan. Rasa insaf melihat keadaan budak2 lain...

...bersambung
Untuk Aishastory saya akan sambung tulis dalam bahasa Inggeris.