Malaysian's Clubfoot Blog

Dear readers,

I'm launching a new blog dedicated to Malaysian's Clubfoot.
Thank you for your continuous support and I hope we can help each other to acknowledge this problem and motivate each others.

-Zarina

A plain Update

It’s been a long time. We hit 10K!!!Yeah…I can foresee super bonus is coming…:)

Update on Clubfoot

I’ve yet to set a date with Karangkraf for the magazine interview.
Yeah need to take half day leave for this matter.
I’ve started writing to some of the local newspaper and magazines.
I’ve ordered some Ponseti T-shirt to show support to the organisation.
I’ve received a lot of inquiries on clubfoot via cari forum…*sigh*


Update on Dania

Dania – coping well with shoes…alhamdullilah..We put her full time except for shower time & stretching. We gave her allowance to enjoy Pool Fun time at Wetland.
But below photo shows what had happened. (Courtesy of Cakcibo – the photographer).



Dania is so unfriendly to anyone except her babysitters and us.
Currently she is addicted to teddy bears, Pocoyo and any junk foods that we ate.
Yeah we have trained her to eat fries, mashed potatoes, nuggets etc…unhealthy but filling…:)
She does not want nestum anymore, iskkk malasnye nak masak porridge…


Update on me

Finally I’ve got a date for my MRI – brain scan on 19th July at SJMC and follow up with Dr Kumar.
Insya allah – everything will be clear cuma recent mild headache feels like there is a hole inside my brain.
I still remember last time, when I got headache I felt like my brain is bleeding.
For years I’ve been keeping the pain and I still stand high until my dooms day..:)
Yesterday we went to Tony Roma’s too celebrate my hubby’s birthday…it is so yummyyyyy

Update

We've met Prof Sharaf this morning.Very humble and friendly doctor. Far better than doctors in Pediatrics Orthopedic in HKL. He gave us an opportunity to see how he apply Ponseti Method Casting to one of his patient. From our observation, yes his method is correct but we personally thinks that Dr Amnuay's is far better.The patient is 2 months old Indian baby, and she did not cry when the casting is applied.I think Prof Sharaf did a good job in manupulating her feet similar to what I've saw in Ponseti's video.Again , far better than HKL of course.Kalau kat HKL, melalak dah babies ni...casting pon ntah haper2...

Prof Sharaf said that they're planning some kind of workshop of this clubfoot treatment by end of this year where he will invite doctors in Malaysia to attend.Now, he is collecting data for this workshop but his patient is not many.He has 1-2 patients in 2 months. Hmm..How to collect data then? He said HKL has many patients compare to HUKM since HKL is a centre of everything. Wonder why he is not sharing his wonderful knowledge with these doctors. He has suggested that me to talk to HKL doctor. I PERSONALLY think that HKL doctors should see Prof Sharaf at least. (HKL doctors who read my blog, u know what to do).Apsal lah doctors kat HKL ni tak betul buat treatment ni ek?Ker bodoh sombong? But they are doctors what...kalangan cerdik pandai kan?

He admit that before 2004, clubfoot treatment in Malaysia and also HUKM is only surgery. Yes, with many surgeries.In HKL, it is still...hahaha ketinggalan zaman doctors kat HKL ni...

What should I do know? Prof Sharaf suggested that I should write an article and keep on writing to increase the awareness. I think I hv no choice but to publish in a paper. Need to find a good source.

Till then.

This is an emotional entry...

Chronological Events

2007
-Our long awaited baby was born premature and was in NICU for 9 days. The nurse told you that her right feet has mild clubfeet.You saw her right feet was in black blue condition like a blood clot..


-we were scolded by one of the pediatrics specialist while waiting for orthopedic to come and explain on her feet condition...she scolded us for being in the ward after visitation hours but we stay calm since we wanted to know details on her feet. The young orthopedics came and told me that her feet can be corrected by using splint, or casting or surgery.

-Dania's 2nd day of life, she was brought to Jabatan Carakerja for the splint. The progress was so unconvincing.

-On her 2nd week of life, we decided to let the orthopedic cast her feet.

-In HTJ, the Hospital Attendant did the casting..hmm..very much unconvincing..

- We transferred her case to HKL where we heard the doctors can correct her feet. God Knows!!

- 1st surgery was done in July, and another one in October...
the casting looks so Ugly, Malaysian made...

'Surgery does not cure clubfoot. Although the foot looks better after surgery, children will experience stiffness, weakness and pain, and during adolescence this pain often becomes crippling. Dr. Ponseti developed this method to treat clubfoot as an alternative to surgery after his research revealed very poor long term results among surgical patients. '

2008

-She was free from casting but she were asked to use the stupid splint. But the 2 doctors opinioned that she need another surgery, yes the 3rd one. They said her feet is so rigid...Cant do much with the casting...From their experience, this is the best solution..But this is what happened..



-I did asked whether the doctor know any hospital practiced Ponseti Method. This MO claimed in HKL, they used Ponseti method. (I've forwarded this claim to Dr Ponseti and he is very upset)
-I cant think so much to help her ..at that time i do not know that i had brain tumor. most of the time I had a severe headache and I'm addicted to panadol..fainted in the office, was hospitalised for a month in SJMC..

-I prayed in front of Kaabah, Pintu Mustalzam, Hijd Ismail and when kissing Hajr Aswad, that Dania would skip her 3rd surgery schedule in mid April, and her feet can be corrected without anymore surgery. Allah has granted my wishes.

- Went to Bangkok every week starting May. Seeing Dr Amnuay Jirasirikul at Bumrungrad Hospital..4 times casting, he manages to keep her feet corrected WITHOUT surgery..

The casting looks so professional, Bangkok made...


- Dania in Ponseti Shoe which cost us RM1,400 which we bought from Iowa, US.

My dream
- to help parents' children with clubfoot problem; to have their children get treated with REAL Ponseti Method.
-Need to increase awareness of Ponseti Method not the modified one among Malaysian Orthopedics..
-Met Marina Mahathir today, she encouraged me to give a talk to this parents...how i go about this?hmmm

How many of you willing to see your own daughter's feet were casted at most of her time while other babies were swimming, crawling, walking happily?

How many of you had accompanied your daughter to the OT with ONE hope for her feet to be corrected but the doctors had failed?2 times..:(

At her 14 months age, she supposed to cruise like any other normal baby, but she cant ; yet; I think she need more time to realise that she has two feet. All this while she only saw her left feet. How’s that?

How many of you facing the same problem as I had?3 miscarriages, had incompetence cervix, 4th pregnancy with many episodes of bleeding, baby born premature and with clubfoot, diagnosed with benign brain tumor had 2 surgeries involving brain, and not to include parent's problems and what not...so how many of you can get through on what I've been through?


Not to seek for any sympathy...but this is what had happened to me...Sick with incompetence skill of the doctors BUT still admiring my gynecologist and also neurosurgeon..


Sound offensive? This blog is not meant to you for visit and you can go to hell!!



Disclaimer

If this blog sound offensive to the readers, the readers should not visit this blog anymore.This blog has no intention to seek for sympathy, to create riot or strike or harm to this peaceful country..This blog tells you on the author's expression of her life...

Friday meeting

Actually I'm in stress mode....not because of this coming meeting with Dr Sharaf and I can't figure what caused my stress...I just had my presentation to all UMWT Panel Bankers in front my Top Management.Latest news from the bankers - Interest Rate Hike, my friend. Effective next week...only affected Automotive industry..so far...This month we had faced a lot of crisis...food crisis, petrol crisis, semua barang naik...coming soon interest rate hike...i personally think BLR is gonna shoot up...:(...next month!!

Oh ya, talking about my meeting with Dr Sharaf, I'm expecting a smooth discussion..I hope he can help me to increase the awareness of the Ponseti Method..I can't see who else can help me..I've emailed him that I would love to discuss as per followings :

1. Statistic on Ponseti Method by HUKM since 2004 plus success stories
2. Method or mechanism to increase awareness of this treatment – media print, talk , visitation etc,
3. Workshop by Dr Amnuay Jirasirikul in HUKM - tentative date, venue, who should attend
4. Certified Ponseti Doctor in Malaysia

The meeting should last for an hour or two since I'll bring my Dania.I do not how long she can stay calm in the clinic. She hates doctors, how's that?I'll bring some photos of Dania's feet since she was born, stupid splint done in HTJ, feet progress in HKL and also post visit of Bumrungrad Hospital.

Hurm..am I too complicated?

Disclaimer

Dear Readers,
‘A blog (short for weblog) is a personal online journal that is frequently updated and intended for general public consumption.’

This is my blog where I can freely write and express my feelings, my frustration, my thinking, my opinion and anything that crossed my mind.
You are free to view my blog at anytime, anywhere and any days.

If you don’t like it, this blog is not for you. You may view other blogs, which may related to your interest. If you found my blog is not favorable to your interest, just ignore it.

Don’t apologize, and don’t get hurt on what I have written but feedback are welcome.

I’m a very expressive, outspoken and vocal person and I need to continue blogging as my brain is not virgin anymore if I keep it to myself.

-Zarina @ kimytooby.blogspot.com

Happy Father's Day Abah!

Dear Abah,

I know I'm too small to understand,
I know I'm too young to figure it out,

But later I knew, mama will always tell me that

Abah will always love me,
Abah will always love us.

Thank you for being with mama when she lost her babies..
Thank you for being with mama when she was carrying me..
Thank you for taking care of mama when she was really sick..

Thank you for taking care of me when mama was hospitalised..
Thank you for brought me to Bangkok with mama to fix my feet..
Thank you for consoling me when mama scolded me..

So much to thank you..

p/s: mama wrote this coz I'm too small to compose..:)

Finally, they can be reached

Got email from Dr Sharaf, specialist a.k.a Professor Orthopedics in HUKM. Invited me to see him at HUKM this Friday or next Friday.

Another email from Dr Razak from HKL. Basically he said 'Utk pengetahuan puan, sebenarnya pihak kami tidak pernah mengubah suai apa2 tentang ponseti method. walaupun belum ada sesiapa dikalangan pakar ortopedik yang mendapat training secara terus di bawah Ignacio Ponseti, pihak kami telah menghadiri workshop2 yang disebarkan oleh pakar bedah kanan Ponseti sendiri seperti Dr Jose Morcuendo (beliau telah datang ke malaysia semasa POSNA meeting di KL pada 2007 dan menganjurkan workshop ponseti) dan baru2 ini saya juga telah menyertai workshop yang di anjurkan semasa konference di Korea dan di kendali oleh Jose sendiri.'..

Your ass lah doctor! mana Ponseti method involve surgery. Surgery tuh bukan maksud u r modifying the method ke?..cait!

Dr Halim...I believed Dr Sharaf's colleague from HUKM jugak...pon bukan main megah kata practise Ponseti Method...meh sini aku nak tgk Ponseti ker tak Ponseti...

Tapi doctor kat HUKM ni humble lah sikit...yang HKL ni yg tak tahan nak gelak...siap cakap 'berbeza sekarang, kita semakin established dan kesukaran mendptkan brace yg sesuai telah di atasi. kebanyakan bayi yg telah menjalani rawatan di klinik kami mencapai keputusan yg seperti yg dijangka. malah kita telah membentangkan kertas saintifik mengenai kejayaan kami di konferen2. keputusan yang didapati sekarang adalah pada paras 70-80%.'..Hahaha...funny..most of the parents that I've interviewed, all of them at least has gone 2 surgeries la wei...Siap bentang paper kebende...

Enuff said.

the 5th trip...and finally

We hv completed our weekly trip to Bangkok..no, no yet...we'll hv another follow up in July 22nd...
Dania finally off from cast, she has started wearing the Ponseti shoe. Above photo was taken during the 5th trip with Dr Amnuay Jirasikul. Dania still afraid of him but she got stunned when Dr Amnuay kissed her cheek. Gedik sehh!!

Aisehh...the 5th trip was too short la since we took early flight back to K Lumpur.Yes, we've booked 9th June flight to Bangkok, need to reschedule to 21st July errr this date sounds familiar..ciss punah harapan to continue my shopping next week and Bangkok is on sale until 30th June.

Dania is a good girl..so far no fuss ...alhamdullilah at least we dont hv to worry about her coping with the shoe..:)

Happy 94th Birthday Dr Ponseti

Ignacio Ponseti was born in 1914 on the Spanish Island of Menorca. As a teenager he worked at his father's watch repair workshop where he learned training and precision. At the age of 16 he began attending the University of Barcelona where he earned a degree in biology as well as an MD. Following graduation in 1936, Ponseti served as a medic during the Spanish Civil War, treating hundreds of orthopaedic wounds.

In 1941, Dr. Ponseti came to the Unversity of Iowa to finish his residency and went on to join the faculty of orthopaedic medicine in 1944. Dr. Arthur Steindler, the head of the department at the time, asked Ponseti to review the results of clubfoot surgeries being performed at the University of Iowa, and what he learned was not encouraging. He found that, in adulthood, former surgical patients often experienced foot stiffness, pain, arthritis, and limited mobility, and in many cases required additional surgery.

By studying the anatomy and functions of a baby's foot, Dr. Ponseti developed a non-surgical method to correct clubfoot in infants through gentle manipulation of the feet followed by the application of plaster casts. The success of the "Ponseti Method" has been well documented through patient studies and research articles.


- May God bless you with good health, prosperous, and live happily ever after. Thank you so much for inventing this method!!

update for 5th trip To Bangkok will be coming soon!!

The 4th trip

Another nite in Bangkok...the flight was delayed..reached Bangkok about 11pm..We are really tired since we went back home sharp at 5.30pm..6.30pm moved to LCCT...

We went to Central Word after the doctor's appointment..Bangkok is on sale, my friends!!..we grabbed 501 jeans (25% off), and Dania got her some new clothing from Guess Kids (40% off)..and we have our VAT refund at the airport..


Update : Dania's feet looks good and amazing..This will be Dania's final casting since her tendon and heel cord are both soft...we've ordered Ponseti shoe from Iowa, US. We need to get the shoe before off to Bangkok again, if not another casting session will be applied to avoid relapsed. In Malaysia, these shoes are used without the brace. I have no idea what is the purpose of having Ponseti shoes without brace. I think Malaysian Doctors love to do magic or gimmick on this shoe., hahaha...Dania will be in this shoe full time for the 1st 2-3 months, and after that, to avoid relapse, she need to wear the shoe during nite time until she reach 5 years old.

Dania's feet after 2 surgeries done in HKL.

Dania's feet after the 3rd casting without any surgery done in Bangkok.

eh we fly with AK887 in Man Utd edition plane..hehe



Need your help my dear readers,
I am thinking to increase the awareness of this Ponseti method to help Malaysian babies born with clubfoot to be corrected with the CORRECT Ponseti Method. I've been emailing to Msian Orthopedics Assoc, and some other Orthopedics doctors, but no reply from them so far..I'm very sad..Dr Ponseti suggested Dr Amnuay to do workshop in KL (which he did) or Malaysian to send a team to see him and stay for couple weeks to learn this method. Anyone can help me?

The 3rd Trip

We spent overnight in Bangkok…we walked along the Sukhumvit Road and explore the streets..We browsed the Arab Street near Nana…Wowww they sell pornographic movies openly..erkk ‘gayat sikit’…Dania didn’t enjoy the trip I guess because she fell asleep…

Kakti – u remember I ut on police uniform when we took the family photo? Hehe, I found it in Bangkok…They sell in the form of army dress, army skirts, S.W.A.T uniform etc…sold at 499 Baht…My hubby kata mahal so we didn’t buy…But it’s cute to see those uniforms…
We didn’t buy anything but we ate the Siam Mango and kebab…sedapnyeeee …our next trip target is Central World…

Update – Dania’s feet looks 80% ok…now flatten…I think she amazed with her right feet because during the cast-off time, she looked down to see her both feet standing steadily…Tak sabar nak tunggu another 2 weeks…Dania’s feet will be cast off and the braces will be on…Yes, she went through a lot in her tiny life…I hope when she grows up, she will be a tough woman, tougher than me of course…

The 2nd trip...;the amazing race

we took half day..the flight was at 1.40pm, reach at 2.45pm (Bangkok time), Appointment at 5.15pm..flight back was at 8.20pm..

Yes, the amazing race as my high school friend; shell named it...haha...will not be repeated sebab i'm recovering from the Brain Tumor operation...my Life is so precious and adventurous...hehe...

Dania casting removal was done in the hospital..she is aggressively crying all the way since the basin is so damn big..her right look so fantastic and corrected...but we just cant stop there...from 7 planned casting, doctor shorten it to 5 casting since Dania's feet progress is good...therefore, 3 more to go...then after than Dania is free from casting...insya allah..

I will hv my 3rd follow up check up on 31st May...followed by scanning...do not know whether is CT Brain scan or MRI...but I'm ok...recovering but sometimes ada pening2 sikit since the scar tuh still healing kot...tak perani lagik tgk my scar..haha..

We are going to Bangkok again on Wesak Day for the 3rd time..

till then...

The First Trip to Bangkok

We arrived at bangkok at 6pm..Dania's appointment is on 6th May at 9.30am...Amaze with the Bumrungrad Hospital. Once we arrived at Orthopedic Centre, we've been welcomed by the friendly nurses and of course Dr Amnuay himself. By the way he is also a Doctor Golf, who can treat Golf Amatuer injuries.

As expected, he is very warm and friendly with the kids. He told us that a team from US and himself hv been to Malaysia to promote the Posseti Method at UH few years back. Hmm..I think Malaysian Doctor is so damn lazy to study further more..haha that's why Malaysian Doctor love to do surgeries as a short cut solution and they think they can just cut ppl's feet like cutting a fish...dont u think so?He keep on asking is it too difficult for us to come all the way to Bangkok. He looks so worry but We just dont mind at all anyway as long as Dania's problem can be fixed at his good hand.

Hey the bill is only 4,000 Baht...around Rm400...very reasonable..We can see ppl over the world come to this hospital for treatment...Pak Arab, Koreans, Japanese etc...and they have Starbucks in their Hospital...amazing huh?

We are going to Bangkok again, every week, at least 6 times more...

We are going to bangkok...

Dania was born with mild clubfoot at her right feet..On her 2nd day of life, she has a splint on her right feet..Then we decided to bring her to HKL since at HTJ Seremban, her progress is not so convincing..

It's been a year we've been follow up with HKL, 2 surgeries hv been done..Yes it is very hurtful when I hv to sent her to the OT but anyway, I have to be brave enough to go through this..She is healthy and normal anyway despite of her premature baby status and her clubfoot thingy..and most of her time , her feet is casted..

I planned to do my MBA this year, but I think I need to postponed until Dania's feet is corrected and able to walk as other normal baby..(yes, I did not go to the MARA interview)..

We've been communicated with Dr Matthews Dobbs from Missouri USA and Dr Posseti of Iowa USA(the man who invented the Posseti method to correct clubfoot problem without a surgery), and he has recommended Dr Amnuay Jirasikul from Bangkok...So, we are going there this Monday 5th May...This doctors are amazing doctors, they gave u a reply within 48 hours..Can Malaysian doctors do that? I dont think so!!

Just to express my feeling towards Malaysian Doctors in Paedetrics Clinic in HKL, who claimed they used Posseti Method...I think they need to go school again or I should ask Dr Posseti give them a spot check..and please dont think that all parents who seek treatment from HKL is stupid and can not afford to get 2nd opinion (buat muka taikk pulak mcm dia sorang terrer!!)...sorry Doc, ini zaman technology macam-macam info kat internet!!!

The journey...

edited 26/4/08

Syukur alhamdullilah, I finally reached home safe and sound....9 days in Madinah & Mecca is most unforgettable and memorable... At this moment I still miss Kaabah a lot...We stayed at Anwar Al Madinah Movenpick which takes about les than 5 minutes walk to Masjid Nabawi..In the same building attached with shopping mall..I bought Movenpick ice cream almost every day...6SR per scoop..



One of the dates trees at Majid Qiblatain...the mosque where Rasulullah s.a.w. has got a message from Allah to change the kiblat to Kaabah...



Masjid Nabawi at one corner...I shopped around and Madinah is the best shopping for Jubah..hehehe..cheap, good bargain, more choices...



This place is where para syuhadah buried in peace at Jabal Uhud...Al-fatihah..

Kitaorg tunggu bas nak ke Mecca and singgah di Bir Ali utk niat Umrah...My mum and her new friends also org Nogori..Org Ghomeh!!!



Ini antara my photo during the trip kat Jabar Nur...inipon suruh sorang kakak tuh amek gambar...my mum tak reti nak guna digital camera...penat dah ajar...but still dia taknak tgk screen but she looks for the scope...



You see the white spot at the top of the above photo? Itu Jabal Rahmah (the place where Nabi Adam & Hawa met) and now this is a place where ppl wish to temukan jodoh or panjangkan jodoh spot..my mum talked about it almost everyday...she cant wait to climb up but on that day itself, she failed....but I did...ye my friend, I've prayed for all my singleton friends, and my beloved sister to meet jodoh yang baik2...:)...amin!...she scolded Kak Bibah (not yet married and now aged 45 years old) for not to try to climb up...erkk...i told my mum depan kaabah kalau minta pon makbul...my mum is extremely believed that at this Jabal Rahmah is more makbul...itu yg aku hangin ni...she makes that kakak gelisah tak tentu pasal the whole day...boleh?..oh ye kakak tuh yg ada kat tengah2 gambar...



Masjid Nabawi at night...kat sinikan dlm masjid u'll will terpegun tenguk the architecture of this building...the interior..subhanallah...



Pintu Babus Salam...



That's all...ada banyak lagi gamba..tapi tak larat nak upload...

Lesson from this trip..

1) My next trip will be with my mahram, yes with my husband..before Dania setart schooling insya allah nak gi sana lagi....susah tumpang mahram ni but I'm lucky my mahram family is very warm and friendly...

2) Get blessed before u go especially from ur husband if u r married..or parents if u r single...my mum is a very good example...kesian mak but what to do...

3) To my mum - bring ur own watch, selipar, money for extra luggagge...

4) Jangan depends dengan orang lain...sometimes u hv to go on your own and decides what best for you...

5) I will not choose Tabung Haji Travel anymore...but for the beginner, yes you can...but if u go with some experienced ppl..pls choose other agency...

6) Rindunye dengan Kaabah...

Sekian...

Syukran

Alhamdulllilah, ibuku dan aku telah pulang ke Malaysia dengan selamatnya....
Photos and stories will be later.

Laibaqallah...hummalabaiq

Dear readers,

I will performing Umrah starting 12th until 20th April Insya allah..
Leaving my husband and my beloved daughter behind...
Anyway, dah terpanggil menjadi tetamu Allah after all the miracle that happens to me...

Minta ampun dan maaf atas segala kesilapan while blogging atau apa saje salah silap...
Insya Allah kita bertemu kembali...:)

Happy Birthday Dania!!

She loves Barney. So I bought Barney cake for her and also cupcakes. Both are from Mamachaks.
A day before today, I finally bought the drinks, confirm the cakes and also the door gifts.


The day...



We start our day dgn pegi Kg Tunku for the Barney cake & kapkek...The birthday party start at 4 something at Dania's nursery...A lot of kids...The Kids loves Barney until ada yang tegur 'Kesian kaki Barney kene potong'...ada yang mintak the green part which is Barney's chest...dorang ingat aku ni tgh sembelih Barney ker...cait!!!
The nursery prepared the hot drinks and meehun..I did fried some nuggets...and brought tomato sauce..here some photos again...



fun& well organised anyway..the nursery decorated the balloons cuma my hubby tak sempat nak ambil gambar the decorations...takpe 1st time experience ....cuma the starting the kids should wear the fun cone cap...but they all excited tengok the cakes..they sang along but Dania mcm blur2...ramai sangat orang kot...
So, next 2nd Birthday, Tokyo Disneyland, anyone?

Clicking the clock...

It was like just yesterday I've given birth...
It was like yesterday i was admitted to GH for premature contraction...
It was like yesterday i found out my baby is a girl...
to be continued...