Morning Has Broken

I love that song....'Morning Has Broken'. While the lyrics was actually penned by a poet named Eleanor Farjeon and the melody is a reminiscent of an ancient Gaelic hymn, the song made popular by Cat Stevens aka Yusuf Islam, is actually about the celebration of God and life in general. The lyrics also mentioned about the breaking of a new dawn - which was exactly how I felt when at last, my husband and I got to meet up with DSH's Neurosurgeon.

We were finally briefed on what Crouzon Syndrome is, how to treat it and in Malaysia, where. Our fear of not having enough finances to bring Adam to Australia or the US for treatment was appeased, somewhat.

Thank God, there were specialist in our very own National University Malaysia Hospital (aka Hospital Universiti Kebangsaan Malaysia - HUKM) and the Kuala Lumpur Hospital (aka General Hospital - alas not the Rick Springfield version). You see, Malaysia Boleh!

That Monday was also the first time I actually cried after Adam's birth. Not thinking of whether God has dealt us a bad card or anything, but rather finaly knowing and undesrtanding what little Adam will have to go through in his quest to lead a normal life.

Crouzon Syndrome 'sufferers' (for the lack of a better word) differ from one another. In fact, craniosynotosis itself has different branches of diagnosis - namely Apert, Pfeiffer and Meunke Syndromes to name a few.

Luckily for us, Adam's predicament is affecting his neck upwards (as from what we can see for now) - ie he has small ENT passageways, very very very (and I mean very) shallow eye orbits and of course a fused skull. But after a general check up, his lungs and other internal organs seemed to be as they should. In fact, his brain was also the normal size for a baby his age and his whole head is quite rounded as per normal babies. And unlike those with Apert Syndrome, his fingers and toes were perfectly well formed. For this, we really thank the Lord.

(Pix - Illustration of a craniosynotosis recontruction)

But like those with craniosynotosis, Adam will have to go through series of surgical help from as young as 3 months old to as old as perhaps 15 years old and even in his twenties. In fact, Adam's eye socket condition is considered quite severe. (I still cannot forget my Gynecologist's expression upon seeing Adam's eyes, when she received him at the birth bed).

But somehow, finally knowing what the ailment was and what to do next definitely lifted the heavy burden off our shoulders. Oh, the burden is still there, but it just felt lighter, somehow.

That was also when dear hubby decided that all the names we were toying with for him (like Airil aka Gaelic for The Nobleman, Arslan aka Turkish for The Lion/since Tiger in Arabic does not begin with A and Arif aka Arabic for The Knowlegeable) do not hold up to our little one.

Instead, we finally decided on Muhammad Adam Faiq - which literally means 'a Sign of Excellence' or 'a Sign from the Excellent (ie The Lord himself)'.

We may not know exactly what God is trying show us as Adam's parents, brothers and sister. Perhaps giving us Adam is just His way of showing his Greatness or for us to further acknowledge Him and buck up and worship him more, or maybe perhaps to simply leave Adam in our care as there would be no other better family for a special baby like Adam than us.

Perhaps (as proven later) it is also a sign (and knowledge) from God to his doctors who has and will treat him, for the Malaysian Medical profession, for his Indonesian nannies who cares for him in my absence and even for mankind in general.....

(Pix - Adam's Indonesian Nanies - Eli & Yati)

Should You Have To Take Him Away From Us....

I have just recently updated my siblings of my blog on Adam, and asked them if the entries were too sappy.

My brother actually commented that it was not sappy. In fact, he suggested for me to inject more feeling into it.

More feeling, hmmm...like I mentioned earlier, now that Adam seemed to be more comfortable, I too feel relaxed and happy with our current situation. As we speak, Adam was still warded, awaiting for his eye ulcer to subside (again, will write about it later), but in general, he seemed to act more like a normal baby - who cried when he is hungry or wet, and even cooed when we talk and play with him. He appeared not to be in pain like he was in the past.

Hence, perhaps, the feelings of apprehension and worry were not there anymore, while feeling of happiness was not quite apparent (or not shown - for there is a popular Malay belief that if you are too happy in one occassion, you may be crying in the next. Morbid, huh : )

However, I'll try to relieve those early days of Adam's life and perhaps share one thought or two of my frame of mind at the time.

Hmm...dunno if I should share this one, but here goes.

I only managed to see Adam when he was put on my belly immediately after birth, and I did notice his eyes then. The doctor and nurses then quickly took him away and shielded my view of him as they cleaned him up. I knew he was different then, but did not feel any shock (should I have? or did I have an overdose of oxigen to not feel anything at the time). Non the less, I did not go into a shock or anything, and still have not till this day (thank God).

But that weekend, when my husband and I were still in the dark of our predicament, myriad of questions, emotions and worry came to our minds.

What is this ailment? Will he be mentally sound? How do we treat it? Is it fatal? Will he be 'normal'? Will we as a family lead our lives as we previously have? Or will we undergo a drastic change with this ailment? A change for the worse?

Finance was the least of my worry at the time, because I always leave that part to my husband, but when one of the doctors mentioned treatments in Australia and the US, I too began to worry.

To the extend that (forgive me for being human) I actually posed this request to God - 'Dear God, should you have to take him away from us, please do so before I start falling in love with him'.

But the damage was already done. How could you not love someone you have been carrying with you for the last 9 months?

And when I saw him for the second time, at the ICU, he was wrapped up in a pink blanket (much to the changrin of his sister when she saw later that day - 'He's a boy. He should be in blue!' : ). You tell me, what could be more adorable than a baby in pink blanket!

But the moral of the story is - God will answer those who prays (and you must). What may seem like a lost cause today, may actually turn to be a treasure tomorrow. Elst, you die hoping : )

But seriously, as Yoda would say - 'Give up you must not, as giving up is not in the vocabulary of those who believe'...... (sorry, quote was totally made up by moi).

Till next time, may the force be with you.......

No Room for Sadness

Now that Adam is already 2 months old and settling nicely (will write about it later), it is a little difficult to recount the dark days of his first month of existence.

Adam was born on a Friday afternoon with his eye procedure carried that same night. The day after, the Paeds Doctor came to see us to share Adam's prognosis as Crouzon Syndrome, a rare ailment that caused a early fusion of the skull.

But the NeuroSurgeon who was supposed to explain the ailment to us further was away for the weekend. Hence, with only the Internet as our source of information, we learned about the ailment as best that we can. And with the Internet being an inanimate source, the information that we found somehow came accross as a scary thing and doomed situation for us.

Somehow or rather, the DSH Ophthalmologist became my first source of comfort that weekend. Apparently at DSH, Ophthalmologists also sometimes doubled as Counselors (kidding :). While speaking on the topic of Adam's eye condition, we also touched on the subject of Crouzon and other related issues.

I actually mentioned that receiving Adam into the world was supposed to be a happy occassion and trailed off with a big 'But...' hanging in the air.

Dr Radji admonished me and said that it was a happy occassion! With Adam showing his early signs of being a fighter, she also reminded me that technology can now do wonders. With the subtle helping hands of God, Adam has nothing to look forward to but positive things. She also mentioned that we were often dealt with random wild cards and that we should accept what was given with open hearts and minds.

Feeling a little guilty of the negativity that I felt about the situation at the time, I embraced Dr Radji's words of wisdom and decided there and then, that I would move headlong with the situation and take whichever road that God has put in front of me, with the best ability and resources that He has bestowed upon me - all fo the sake of Adam's and our family's wellbeing and happiness.

It was also then, that my husband and I decided that there should be no room for sadness. Worries, yes....but not sadness.

Like Dr Radji said, receiving Adam into our lives was a happy occassion and que sera sera.

Knowledge and prayers would guide us from that point onwards.

Thank God for Little Miracles!

When Adam was born, his eyes were literally out of its sockets.

Well, not really (smile).

They were in their sockets, though not within their eyelids. We were told (well, only my husband really, as I was still busy on the birthing bed) that Adam had shalow eye orbits (refer General Symptoms of Crouzon Syndrome) which resulted on his eyes the way they were. They needed to operate on him immediately in order to repair any damages that may be. Eyes lids (fashioned from skins taken from other parts of his body, perhaps) may also have to sewn in, for instance.

For an adult, it sounded like a scary situation to be in. For a baby, it was even worse. General Anesthesia (GA) was also not a good thing for young children, let alone newborns.

But we did what we must, and so we placed little Adam in the trusted hands of the capable doctors of the Damansara Specialist Hospital. So, approximately 3 hours after his birth, Adam had his first ever visit to an Operating Theatre (OT).

Two ophthalmologists worked on him simulatneously in order to limit his time under GA.

The findings were - he had a perfect pair of eyes with all optic nerves intact and pupils responding accordingly. Miraculously, he also had 2 perfect sets of eyelids tucked behind those big pair of eyes of his (hence, there were no need for any cutting and pasting). His eyelids were sewn together, though, at all 4 corners in order to keep the eyes in and protected.

As a result, he looked just like any other ordinary baby - just with massive eyes bags.

But we did know that the eye condition was just side effects of something greater, and with that, we braced ourselves for the worse.....

About Turn!

On March 5, 2010, we welcomed the latest addition to our little family - a baby boy we named Muhammad Adam Faiq. Today marks our little bundle of joy's 2 month birthday and I feel that today is the best day as any for his Mommy to start of her recount of their their current and future family adventures centering on little Adam himself.

You see, our Adam is one in 25,000 or, in some census, one of 16 in every million people in the world. In short, our little Adam is special. At birth, the doctors diagnosed him to have a rare medical ailment termed as the Crouzon Syndrome.

'Crouzon who?', you might ask. His father and my reactions too at the time.

Jenny67's homemade video on 'What Is Crouzon Syndrome' very effectively explains what the ailment is all about.

What I hope to achieve with this blog is not for it to serve as a medical journal but rather to share experiences from a layman's point of view so that many who are in the dark about this ailment can be more informed and those who are already going through such similar experiences, know that they are not alone in this.

Please also be forewarned that my family and I are of the Muslim faith and from Asian origins. While I will not, consciously, belittle any other beliefs of the world, I may make references to our experiences in religious context, though quite sparringly, I promise (smile).

So, for those who would like to share our journey, hop on and hang tight! It may be a bumpy ride. Let's pray for a safe journey and happy destination.