Showing posts with label Cleft baby. Show all posts
Showing posts with label Cleft baby. Show all posts

Tuesday, 11 December 2012

OFFENDED!!!!

Well well well..... I seriously feel so offended with ING Insurance.  I am applying for my twins insurance with them.  ING defer Zarif's application until he reach 1 year old.  Defer is the most polite way of saying my current application has been declined.

Reason :-

  1. verbally said because he had a surgery at a very young age.  Any cleft babies would be advised for a surgery as young as 3 months old (I think ING need to read through or study what Cleft is all about).  


Facts :-

  1. the application has been declined without granting any medical report from the surgeon nor the hospital.  
  2. Cleft lip repair is not a life threatening disease.
  3. I have agreed for an exclusion for anything related to his cleft lip repair.

Offend :-

  1. they offer a deferment proposal and a form for me to sign to agree on Life Insurance Policy since Zarif is not eligible for the medical card.  What kind of mother do they think I am???  Want to be benefited after??  I want an insurance coverage for my son for his presence!  How insensitive!!
  2. they forward an authorization form for medical report - NOW?? After they have declined??
  3. ING is one of the biggest sponsor for CLAPAM... and I seriously do not expect this from them.


IF they were to decline based on any medical report or requesting me for a higher premium, I would understand.  But to decline at the first submission...(oooopsss defer as they put it) is totally offensive.  At the age of 1, Zarif will still be a cleft baby and had his surgery at age 3 months old!

Justice for all the cleft babies out there!! They deserved to be insured too!!



Friday, 16 November 2012

Recovery - after surgery

YOU ARE SUCH A STRONG BOY SAYANG!

We stayed for 2 nights and we can't wait to go home.  We miss Zafri so much.  Mama was telling that Zafri was so restless.... 

After 4 days, the doctor took the plaster off.... didn't get to see his smile yet.  But not long after... he started smiling again...  Syukur sangat pada Allah swt.....  The recover period for baby is faster.... thank God for that.  




Moral of the story, keep calm.

We still take Zarif for his follow up check up with the Plastic Surgeon and Dental.  For now, we apply the Vitamin E oil to his scar...  

Sunday, 17 June 2012

Be strong dear heart....

"Mama...adik takut"... hmmmm nope.... that was not Zarif telling me.  It was me telling my mum just now.  A mother always need her own mother to tell that everything will be alright.  Mama also said she is afraid/nervous too... this is also her first experience with her own cucu... It's good she is not hiding her feeling... at least I know it is ok to feel what I feel...

I've been wanting to see the video on how the surgery would be done.... had no guts! But today... the curiosity gets higher.... as the surgery is just around the corner - i need to know how..i know the theory.. now i want to know how it would be done physically.  So, I youtubed.

http://youtu.be/Mn6ShNspVfw

Bermulalah episod banjir di dalam bilik.... oh dear heart... please be strong.

As I mentioned earlier, I am very factual person, I guess... after knowing how (my heart broke even more...) but NOW I KNOW and I feel such a relieved.  There will be pain, there will be crying.... there will be recovery.

My dear heart,
Be strong. I need you.

My Almighty Allah swt,
Please forgive me of my sin.
Let the pain be more in my heart than to him...


I accept your test, as your love to me..
What you are doing is reminding me...
Otherwise you wont be choosing me..

Wednesday, 30 May 2012

Feeding Time!!!

Cleft babies took longer time to be fed.  As for Zarif, at first we use Softplas bottles and spoon feeder :-


When we were still at the pediatric ward, the nurses thought us how to use this bottle :-



It took hours for Zarif to finish even 45ml.  Poor little boy.  Dia rasa tak puas minum and it really shows.  So, when we went back home, we tried to use MAM Orthodontic Teats (which we get from Kak Zuraini upon registration as a member) :

Front View (p.s : the teat is without the bottle)

Side view
Zarif seems to be able to suck it and enjoy his milk better.  You can get all this from CLAPAM.

I can't wait for the day that I can breast feed my little Zarif :)



Doctor's Appointment

We brought Zarif for his Cleft appointment at the Dental Clinic of PPUM.  I was hoping to meet Dr. Siti but there was another doctor there.  Kak Zuraini was also there since it was a Cleft Clinic Day.  Cleft Clinic is open every first friday of the month.

My impression when I met this doctor named Dr. Aung was not so good.  Anyway, he gave us an appointment for the surgery in September cos before that he won't be around.  We also yet to go for an appointment with the Plastic Surgeon.  So we told him that we have an appointment with the plastic surgeon.  Then only we know that we can choose either him or the plastic surgeon to perform the surgery.  One of the nurse, discreetly whisper to Kamal recommending us to go for plastic surgeon since Zarif only has a cleft lip problem.

After our appointment with Prof. Alizan, the Plastic Surgeon, both Kamal and I were very pleased on how he explained about Zarif's cleft problem and the corrective measure.  A good doctor took half of the worry away ok!!  We can't help but to compare between him and Dr. Aung.  Prof seems to be more communicative and comforting.  He is also a very fine looking man hahahhahaha... oooppss! ;p

Prof. Alizan arranged for an appointment for us to meet Dr. Aung again with regards to Zarif's lips.  He wanted to bring down and make the left lips nearer so that it would be easier for him to do the surgery.  The very next day we met Dr. Aung.  Hmmmm.... sorry to say, his muka ketat already make me feel want to leave.  He said, he find there is no need to do whatever thing requested by Prof as it will not help much.  Anyway he asked us to wait outside while he tried to call Prof himself.  There was a small incident happened, when he asked us to wait outside, I couldn't hear him so I said, "Sorry what did you say" and he gave me that look "itupun tak faham ker" and the nurse explained to me in Malay.  I can understand English perfectly!! I just wasn't able to understand him!

While waiting, we saw Dr. Siti. Thank God!!  Well of course she gave her point of view etc etc...  She is a very pleasant lady... but with everything in our head we were confused, who to chose and on what based should we make our decision.

So, our helpline was Kak Zuraini of CLAPAM!!  She said, since it is only cleft lip, it would be best for the plastic surgeon to do the surgery.  Kak Zuraini is an angel... when I was calling her, she was actually driving.  She told me she will call me in few minutes so that she can park her car and talk to me!

Anyway, coming back to the issue, Prof insisted us to meet up with the orthodontic Dr. Way.  We managed to get an appointment with her.  She asked us to do what they call it as "strapping".


It is not and will never be easy to see your baby like this!!  So, if you feel like crying - go ahead!! Cry and let it out.  Being strong didn't mean you can't cry.

Strapping is not painful for the baby.  When the first time the doctor did this on him, I cried.  I thought he would be in pain.  Then Dr. Way told us that, it is not painful for him, it will just make him feel uncomfortable.  Actually, after few days, we can see the result.  His upper lips seems to tone down since their muscles are still soft and tender.


There are few things that I realized after meeting few doctors (either related to this issue or not) :

1.  They love to use their medical terms when talking to the patient.  Seriously, either incidentally or not, it is a bad habit.  Unless of course your patient is from medical background by all means please go ahead.  The purpose of explanation is to let the patient (from ordinary background) to understand you and their sickness.  As such, kindly use the layman language here.

2.  Doctors deal with sickness / cleft issue everyday as such it is a small matter to THEM but not to the parents.  It may be a small thing to doctors but for us as parents, to put our child under the hand of the doctors, we need to be able to relate to him/her.  It is no small issue here.

3.  Play safe - in the process for us to make the decision who to chose from, the doctors didn't really gave us the ground base on what base should we look at.  They love to tell us "up to the parents".  From the parents who has no medical background we do not know how to decide.  Would there be any wrong decision?  What is best for our baby?  In my case here - we are lucky to have Kak Zuraini!!

4.  Be communicative!  It is very important.  I have high respect on Prof. Alizan, Dr. Siti & Dr. Way (orthodontic).  They make us feel very comfortable to ask even we think it is a silly question.

Well, may be it is easy for me to say all this as I am not a doctor.  May be doctors have more problems and worries to think about rather than comments like this by me.

Tuesday, 29 May 2012

The day I found out...

4th February 2012 was the day that I did my 3D/4D scan.  I insisted my husband for this scan.  Most of the places (except for private hospital) were full.  I had a dream that I fed only one baby and I don't know where was the other one... That dream kept haunting me.

May be it was a coincident sign from Allah swt.  True enough, when I did the scan, the sonographer told me that one of the baby has a cleft.  She wasn't able to confirm whether the other one has it too as he was covering his face.



The TRUTH - I felt the whole world was crashing on me.  I was trying to calm myself and I guess Kamal was also doing the same.  Soon after we were in the car, I cried like a mad woman.  WHY ME?  I guess, anyone in my position will ask the same question too.  One thing that Kamal said that somewhat calm me down a little bit was "buruk baik anak kita".  I know it is a common sentence however, it was said at the right moment.

I went back home and shared the news with my parents.  I am thankful that they were very supportive.  But yet, I couldn't find my strength.  I was questionning everything.  I start googling and it lead me to CLAPAM.  I called them on Monday and arranged for an appointment to meet Kak Zuraini (the Secretary of the Association).  She was very calm.  When Kamal and I met her, she came with her husband, Abang Zainal which is the President of CLAPAM.  They shared their story of their cleft palate child which is now at his teens.  They showed us the pictures and explain their role to us.  There was one thing that Kak Zuraini told me that really make me feel strong was "this is not life threatening and be thankful".  I can still hear her voice saying it till today.  We registered as a member and they gave us the cleft bottle as for the preparation.

We started to arrange appointments with the Cleft clinic at PPUM.  We get an appointment to meet with Dr.Siti Madzlipah.  What a wonderful lady she is.  I am thankful that I know of this earlier so that I can be mentally prepared.

I was grieving about this, it disturbed my sleeps and emotion.  I can't lie to myself that I am not SAD.  Nobody wish to face this challenges especially at their first motherhood.  BUT at the same time, I find myself moving on.  At the end of the day, one thing that I realized, keep on crying and release yourself, but most importantly WE MUST MOVED ON.