KEEP CALM IT'S ONLY A CLEFT!

This morning I read a few articles written by various medics and non-medics here in Hong Kong and instead of being excited over awareness being brought to clefts, I am rather cross at how negatively the topic of cleft was approached.


If I were not aware of cleft and had just been diagnosed and read the articles I am referring to, it would have scared the living day lights out of me.   I personally think that parents who are diagnosed will want to know

What is a cleft?
Why does my baby have a cleft?
How do we help our baby repair the cleft?

Rehashing the same material that is published in a medical journal instead of being aware of your target audience is just being lazy!  Going into detail about the different instruments used during procedure that your child won't require (if he requires at all) for many years is in my view unnecessary for the newly diagnosed parent.  I chose not to google cleft palate procedure because I don't want to know in detail what instrument will be used on Ultan, where the incision will be in Ultan palate, how much bleeding Ultan will have.  I chose Dr Lam Lai Kun to use the knowledge he aquired through medical school to perform his art.

I wish when an article on clefts is written to the general public, it would be very clear that treatment can only be determined once a precise diagnoses is made.  It is then and only then can course of individual treatment be discussed for the individual patient.

I wish when an article is written by a medic, that they would make it clear that that cause of clefts is unknown and actually very little is known within the scientific field.  I wish they would make if clear that within the science field they are still unsure of the best way to treat different types of clefts.  But they are doing their best with the information that they have.

I would much rather read about the importance of parenting.  I would LOVE for an article to be written on the importance of loving your child who was born with a cleft as you would love your child who was born without a cleft.  I would love to read an article on the importance of supportive parents, family and friends and how this support network will be an important aspect on your child psychological and social development.  But wait, isn't all children's psychological and social development reliant of being surrounded by loving supportive family and friends. My point is, why would your treat your child who was born with a cleft any different?!

In this part of the world, a lot of the published research revolves around social acceptance.  But, don't we want all of our children to be socially accepted?!  As a parent, we never want our children to be bullied nor do we want them to be a bully.  We parent our children to grow up to be happy, healthy, generous, productive beings.  As a parent, I try to expose my children to as much as possible so they will have varied interests.  I hope that they will find "something they love, and love doing it".

I read stories about parents finding it difficult to accept their child's scar and it makes me so cross.  My second born son broke his arm and had to have surgery leaving him with 3 fairly severe scars on his arm.  Should I suddenly find it difficult to accept him because he no longer has 100% movement in his arm and has scars on view.  Seriously, people wake up to yourselves!  Do you seriously think that every parent around the world who has a child who plays Rugby, American Football, Australian Rules Football, Boxes, finds it difficult to accept their child when they get a scar!!!  It really makes me want to scream CALM DOWN, IT IS ONLY A CLEFT. Why are you trying to label your child as being imperfect when all he has is a mark on his face with a story behind it.

To the parent who has been diagnosed -  Ultan was born with a Cleft Lip and Palate and had to face unique challenges that most will not have to face in a lifetime.  He has had two surgeries and hopefully won't have anymore until his bone graft in 8/9 years.  He may or may not need speech therapy - not a big deal, plenty of non-cleft kids do too!  He may need orthodontic treatment but so will at least half his class in school -  not a big deal.  Love your cleft child like any other and medical stuff will just happen as it needs be.

Don't be mistaken that Ultan's (and it should be for any other kid born with a cleft) unique challenges will go against him in being accepted by his family or society.  Do not think that his unique scar will distract from him finding his interests, finding what he loves to do.   That scar, his scar, tells a story and everyone knows the Irish love to tell a story!   His scar, is part of him, a part of his character.  Ultan will always be brought up knowing how much we loved his first smile, how we love his second smile and how we love the story behind his scar.

Just remember, Everyone has a smile, only a few are lucky to have two :)

Cleft Palate Surgery and Recovery

Two surgeries on the same mouth but one would not imagine how different both would be.  Remember the emotional wreck that I was when Ultan was having his lip repair?!  Well, I was definitely more pulled together this time round.

It was a far more relaxed environment and atmosphere amongst us as parents pre-theatre.  This was probably because we know the team now, we know the usual protocol.  Each team member arrived said their "Hellos" (and got their consent/waiver forms signed) and went off to scrub up for theatre.

One of the advantages of knowing your team, is that they hopefully will entertain your requests.  I had asked to be the one who would put Ultan to sleep and sure enough they left the mad Irish woman off to apply the gas mask!!!!  Seated on a stool at the head of the theatre bed with Ultan laying in my arms giggling at the funny surgical hat and mask his Mom was wearing, CS Lam handed me Ultan's mask and I watched Ultan slowly going to sleep giggling at his Mommy's shenanigans.  It was the exactly way I wanted it to be - there was no lashing out from Ultan, scared stiff by the theatre with all these strange people dressed up in green outfits with masks on.  It was just Ultan and Mommy and a mask!

It was still horrendous walking out and leaving him there but I have to say it was not as bad as the first time.  Maybe I trust the team a bit more, maybe I am just used to it a little bit more.  Whatever the reason I didn't feel the need for a cardiologist to be called this time.

Honestly, this little guy melts my heart x

Waiting in his wee cot to be called for his palate repair!

Pre surgery for lip repair @ 7 weeks 3 days old

Pre surgery for palate repair @ 8 months 27 days old

Three and half hours later I collected my baby.  Not afraid to hold him this time, I carried my little man back to his room where he slept for the afternoon while holding his Mommy's and Daddy's hand on each side - sniff sniff!

Holding hands post surgery

on both sides of the cot :)

The surgery was a little bit quicker than we expected (I think we were mentally preparing ourselves for up to 5 hours) and both the ENT surgeon, Dr Hui Yau, and Dr Lam were pleased with how the surgery went.

One of the things I was disappointed with during Ultan's lip repair was the initial lack of pain relief for Ultan.  We had an in house pediatrician working with LK Lam but I didn't agree with his philosophy on pain control (which seems to be that panadol will cure all ills and only once the patient starts complaining).   So this time round I wanted LK Lam to be the one who controlled his pain relief.  Mark and I requested for the first 48 hours Ultan would be very comfortable without pain.  Studies have shown (and to be honest, it is common sense) that if you are pain free you will recover quicker and more successfully.  LK Lam, along with anaesthetist, CS Lam, did a great job of keeping Ultan comfortable with morphine for the first 48 hours followed by panadol and ibuprofen. By Day 6 he was no longer on any pain relief which was a little bit of relief to me - he was obviously recovering quickly, but one worries about long-term use of painkillers.  Besides, Ultan hates taking his medicine and it is a battle to syringe it into his mouth.  Trying to syringe a struggling baby while not going near his wound felt like an obstacle course which ended up with my arm having more sticky pain relief than Ultan!

Every baby should be given an oxygen sensor to play with!

Day 1 and Ultan was so frustrated looking at the sensor but was too dopey to play

Ultan having his palate checked by LK Lam with Nurse Irene.

So Ultan's recovery involved a lot of cuddles but God help you if you stopped moving or sat down, even for a second, you would get a note of disapproval from the wee man!  He has his arm restraints and hates them - I  mean really hates them.    Normally Ultan likes to sleep like this:

but, post-surgery he can't have anything near his mouth which does not impress him one bit.  He did however figure out that if he holds his blanket above his face and lets his drop it will fall into his mouth - yes, I was letting him hold his muslin square to give him a little comfort but we caught him day 3 letting it drop into his mouth - clever boy.  He also figured out that if he manipulated an object up into his armpit he can lean over and chew it....  Or if he lay on his arm restraint, he could wriggle his arm out of it! So, in summary, he hates the arm restraints and smiles are hard to come by when he has them on.

As I write, It is almost 10 days post-op.  One of the biggest surprises to me is how much Ultan's speech has come on within a week.  He went into surgery saying mama.  One week later and he is dadada, gagaga, yayaya, bababa, aaaa and he is adding to it all the time.  I am sure it is the grommets that are helping but obviously having a complete palate is allowing him to make these sounds.

So, what has been the hardest part for us:  without a doubt it was sleep deprivation.  We were thrown straight back into a newborn schedule.  Ultan was waking every 40 mins with extreme trapped wind.  Apparently it can be a side affect of having anesthetic and you just have to wait for the system to wake up and get back in a rymthm.  Morphine would not help as it can cause constipation.  So we tried, probiotics, massage, heat pads, gripe water, and even brought Ultan to an osteopath but to no avail.  We just had to wait for his system to regain a cycle and it took about 8 days for that to happen.  For the first 8 days post surgery, Ultan was unable to sleep - or go back to sleep - without being cuddled. 

I said it before and I will say it again, you can conquer the world on a good night's sleep. Without it, every cry seems amplified, every mundane task a little bit more challenging.

Thankfully though we are coming out the other side, and he slept about 6 hours straight last night, guzzled a full bottle at 430am-515am, then slept again until 745.

Any concerns:  Yes, I fear the repair was not successful.  Ultan has had discharge coming down his nose on his cleft side and I fear there maybe a fistula.  We have a follow up appointment tomorrow and I am hoping that I will be told it is nothing to fear.

Things I should know better:  how quickly babies recover.  Our wee man is a social little thing and loves nothing more than being out and about in the middle of what is going on.  We quarantined him for the week pre-surgery, mainly as this is the time of year when kids return to Hong Kong form all over the world to go back to school, bringing with them every brand of exotic germs and bugs! So Ultan, after a week at home without going over the doorstep and 4 days in hospital, and another few days at home recovering was going off his rocker with cabin fever. So he has been out and about exploring Hong Kong. Mark even had him up The Peak in his buggy for a two hour hike at 450am the other morning (I think Mark was suffering cabin fever too and from lack of exercise!)

Out and about for beef brisket and Efu noodles - yum!

ENT & Grommets

An intergal part of a Cleft Team is an ENT surgeon.  In my layperson's language I will try and explain

Why?

In order for our hearing to function, our middle ear must be full of air which is maintained by a tube from the back of your mouth to the middle ear.  This is shut closed and opens when we swallow air.  However, it is controlled by the palate muscles so between between 70-80% of babies who are born with cleft palate will have a faulty tube.

In June we brought Ultan to see an ENT Specialist, Dr Hui Yau, to have Ultan's inner ears check for fluid i.e. "glue ear".  He was recommended by Ultan's cleft surgeon, Dr Lam, who said they were classmates and always worked together. In the first 6 months of Ultan's life he hadn't had an ear infection and I knew he responded to noise therefore he could hear but I didn't know how clearly.  You can imagine if your middle ear was filled with fluid it would be similar to us listening while under water.  We can hear but it is muffled and unclear.  Ironically it was only days later that Ultan had his first ear infection - his one and only ear infection - which ended up with a 2 night stay in hospital.

Treatment

To treat glue ear, a tiny incision is made in the inner ear and any fluid present is sucked out.  Grommets are placed to act for the tubes by draining out fluids.  These grommets are not permanent and will be pushed out by the body in 6 months or so.  This will hopefully give a chance for the tubes to mature and take over their job.  It is a small procedure and takes about 15 minutes.

Fact

Non cleft babies suffer from glue ear also.  The main reason for this is because the tube is often immature and needs a little assistance from grommets until it catches up and starts doing its job, which is usually within 2 years.

Audiologist

I decided to have an audiologist to test Ultan's hearing.  I questioned my decision in the days leading up to the surgery.  I knew Ultan could hear so what difference would it make if she came back and told us he had ???? percentage hearing loss.  I haven't got the results yet but she did tell us after the procedure that all was OK.

Ear Plugs

However, the good thing about having an audiologist present was she was able to take an impression of Ultan's ear and have custom made ear plugs made.

You see,  the conservative ENT - and maybe even the liberal ENT - would agree that a baby with a cleft palate should not go swimming for the first few years of life.  I don't agree. I think if a baby's ear needs to be protected you can do this by using ear plugs and the baby gets the enjoyment of the pool.  With Hong Kong's sub tropical climate, the pool plays a big part in our everyday life! Ultan has already been in the pool and loves it, as you can see, but we always had to make sure he did not get his ears wet.