Saturday, 22 December 2012

Merry Christmas!

Dear All,


This is Ultan showing off his wide smile when he was 2 weeks old.  In the next month or so he will have his lip repaired (personally, I love his wide smile!).  Mark and I are well aware how fortunate we are to be living in a society that allows us to let our Son have this surgery.  To give back a little we have decided instead of sending christmas cards this year, we are going to donate to China Orphan Outreach Programme which is a team of volunteers who offer free medical care to orphaned children in China.  Amongst this care is the repair of cleft lips and Ultan's Plastic Surgeon is one of the volunteers who travels to performs surgeries for these orphans to prepare them to find a permanent family. We could have chosen Operation Smile or Smile Train, which are also doing fantastic work bringing the opportunity to have cleft repair to so many who would not otherwise be able to have the operations -  but the connection of having the same surgeon perform the repairs was too personal for us to pass upon.

Merry Christmas and best wishes for 2013 to everyone!

From the newly enlarged Lowry Cummings clan, Eimhear, Mark, Seán, Kai and Ultan.

Ultan figures out how to suck his thumb at 2 weeks old

Ultan is like any baby and will seek to pacify himself by sucking. With is cleft palate he cannot create the vacuum that will give them that suckling sensation. However, he is a fighter and won't let a cleft palate stop him sucking his thumb.  












Ultan Telling Stories To Mommy

 You could just dive into his eyes
 "Really, Mommy?"
 Ultan's smile....or is it a smirk?!

"Tell us another one..."



Ahhh, those eyes...




D-Day (by Eimhear)


I didn't sleep a wink last night - which is actually keeping with tradition with Sean and Kai as I didn't sleep pre their c-section either.  Only natural - going into theatre is not a typical day in my diary.  We have to be in the hospital for 7 am and I am so grateful that I am scheduled first on the list for surgery at 830.  I have to admit,that I am such a cry baby when it comes to my family.  As I am wheeled towards theatre and looking up at the strip lighting on the ceiling passing by, I get scared that I am going into a situation where I am completely relying on others abilities to deliver my baby safely and to get me home safely as well.  As the tears rolled down the side of my face, this random person started drying them with an auld woollie blanket.  Seriously, where are the days gone that your tears would be gently wiped with a kleenex.  Nope, I was snapped out of it rather quickly as I had my face exfoliated with the blanket!!  It actually reminded me of something I had promised myself.  I was in bits when Kai was born, however, I had a South African delivering me and an American anaesthetist who really didn't care what I did.  However, I know from experience in Hong Kong that professionals get uncomfortable when they see you cry (hence wipe tears away quickly with auld blanket).  I knew that I was responsible for how the atmosphere was going to be in the theatre, and knew if I was a weeping mess, they wouldn't take me seriously and would probably take Bryo to NICU.  So I composed myself, cracked a few jokes and lightened the room.  I had done my research and was told the protocol or requesting a cleft orthodontic surgeon was through my obstetrician.  I called for her - her name Dr Cheng Mei Chi, never saw or heard of her before but I love her name.  Requested a bedside assessment from a orthodontic cleft surgeon and then told her my son was not to be brought to NICU.  Saw a nurse, told her, my son is not to be brought to NICU.  Saw another person walking past, I said excuse me, my son is not to be brought to NICU.  The anaesthetist says, he is the cleaner!  Ah well, he also knows not to take my son to NICU.  Mark arrives and comments on how good the drugs must be because I am so composed - all an act darling, all an act!

Thankfully the c-section was uneventful.  I was waiting, waiting, waiting for the first roar.  A roar to let me know all is OK.  My goodness, he did me proud, because he came out screaming in anger as anyone would if they were evicted from their home without notice and had a random stranger stick a suction down their throat.  Our Son, our angel that we waited for years to meet was finally here.  Ultan Jian Tor born 30th November in Hong Kong, wieghing 3.16kg.  Our son did his agphar test before we were allowed to see him and he did great.  He screamed in protest throughout to whole ordeal and eventually he was brought to meet his Mommy and Daddy. I wanted to wrap my arms around him but they had me tied to the table like Jesus on the cross! The moment he heard Mark and I speak to him he calmed and looked into our eyes. He was perfect.  Parents who are diagnosed with cleft babies will be anxious to know what is it like to meet your baby who has a cleft for the first time.  I can honestly say that his cleft is only a minute part of him as a whole.  Since the 20 week scan I spent so much of my days worrying about the medical aspect.  That worry completely disappeared once I saw him for myself and I knew that everything would be OK.  When the nurse held him up, I straight away acknowledged in my head that he had a complete unilateral cleft lip and palate but that took about a second before I went to notice his stunning almond shape eyes, his beautiful skin tone, extremely cute ears, his hairstyle - very similar to his Grandad's, his hands are like his Nana's.  He was - he is gorgeous, he is perfect.  A mothers instinct tells me, he will be a joker, be one of the last at the bar, an excellent reader of people, he will beat you at poker, he will like music and will have a guitar in his room.

The nurse took him away and we didn't' know where and nobody would tell us.  Damn Mark, they are taking him to NICU.  Mark chased them down only to find the Baby Doctor in another room doing her assessment on him.  Thankfully she agreed he is healthy and Mark got to spend father/son time with his third boy. Once I was in the recovery room I finally got to hold my baby who just snuggled into my neck and dosed off to sleep.  I was completely in heaven.  I had this complete contented feeling rush over me and it is still with me so much so when Mark asked me what I wanted for Xmas, I told him I wanted for nothing, I had everything - really girls, I said that!!!  Years I have imagined this moment but having gone through the most testing pregnancy, the reward is worth every heartache moment I had. He was in my arms finally and I knew, I just knew in my heart that everything would be OK.

We arrived back at the ward at 5 to noon, I was put in bed and then Mark was in to help and gave Ultan his first bottle.  All of the anxious hours I spent worrying about Ultan feeding were dimished with a gulp of his bottle.  He is a drinker and he drank his first bottle with no difficulty but than again he is Irish!  Mark was getting ready to bring Ultan to the nursery for his bath - we were told it was against Hospital policy for a parent to bath their child in the nursery...really!!!  So I request a basin with water and was told that it was against hospital policy to give water and basin to patients.......(deep breath - choose your battles and this was not one worth fighting).  I said OK, we can wait until we get home to bath Ultan but I informed the staff that I didn't want a stranger to give Ultan his first bath.  It would be his father who would do this which made for much laughter amongst the staff as they behaved like they had never heard of Daddy being involved with his baby.  Mark left after visiting hours and a nurse came and started wheeling Ultan away within minutes of Mark's departure stating hearing test was the reason - being bed bound I had not choice but to let Ultan go.  10 minutes later Ultan return spick and span after been bathed.  I should have said it was against my religion to have a stranger bath my son for the first time....... however, we choose our battles! On, he passed the hearing test too, apparently...




Throughout the day medics were saying that they had a lactation specialist coming to see me to help me.  Great, I thought as I was not strong enough yet to sit up to feed him.  She arrived 9 hours after Ultan was born with a cup.  

Me: Where are you going with the cup?  
Nurse: We are going to feed your baby
Me: Why are you using a cup?
Nurse: Because your baby has a cleft
Me: Are you serious - what century are you in?!  My baby is drinking from a bottle.  How many cleft babies have you seen?
Nurse: I have never seen a cleft baby but I have read about them in books

Me............................ I could have got frustrated but I was actually angry at Queen Mary Hospital for putting her in this position.  She was the specialist that I heard about all day but has never been trained.  She could very easily be trained and then all the healthy babies would not have to be sent to NICU.  She was mortified.  I thanked her of coming to see me but I was doing fine.

A midwife arrived on hearing what happened and told me she was able to feed Ultan and she went off and got a syringe to feed him.  Jaysus, what is it with the hospital and apparatus to feed new borns.  She admitted that in all the years she worked in QMH, she has never seen a cleft baby return to the post natal ward.  She confirmed that cleft babies are usually sent to NICU where they are tube fed if needed....   The heart warming thing about this is that both of them were genuinely interested in how I fed Ultan and some nurses came to watch as they had never been shown how to feed.  I find this sad and wrong that I gave birth to Hong Kong's teaching hospital and they do not supply the education/training for one of the most common congenital abnormalities founds in babies.  Especially as Asians are more prone to clefts you would think that Hong Kong would be the leading Asian city on cleft care! To my knowledge in 2011 125 babies were born in Hong Kong with a cleft.  Queen Mary deals with approx 20 - 25% so if these figures are correct over 20 babies were probably sent to Intensive Care and separated from their Moms unnesscesarily!

Remember when I requested an orthodontic cleft surgeon - well a sweet girl popped her head through the curtain and I started telling her that I wanted Ultan assessed for a NAM.  I will write in further details later what a NAM is but in short it is a 12 week orthodontic treatment for babies with cleft.  She looked so confused that we googled NAM and showed it to her.  She was still lost.  Turned out she was a dentist - oh for -------- goodness sake, my baby doesn't have any teeth!  She informs us that the cleft orthodontic surgeon doesn't do rounds on a Friday.  Are you serious - I had requested my c-section to be on a Monday or Tuesday so I would have access to consultants but was assured when my date was changed to Friday that all specialist would be available to me.  Well, the first one that I looked for doesn't do rounds on a Friday.....  So we yet again turned to London and got a consultation with one of the lead orthodontic cleft surgeons from Guys and St Thomas in London who kindly helped us.  Believe me, I was furious lying in a bed of the Hong Kong teaching hospital, having to rely on the goodness of a surgeon from another public hospital in another country to support us on what we need to do to help Ultan because the orthodontic cleft team in Hong Kong which is probably a few floors away don't do rounds on Friday - none of them do - so apparently, one should not go to QMH for orthodontic treatment on a Friday.  Seriously frustrated Mommy. (since this, we met with the Head of Dentristry, Antonio Tong who informed me that QMH does not have an orthodontic department - could have been informed when I was requesting an orthodontist! - request a meeting with Antonio Tong, he is head of Dentistry and my initially meeting with him was very pleasant.  I hope that he will be the one working with Ultan in the future)

On the plus, I got a visit from Dr George Li, consultant plastic surgeon.  (We had been informed during my pregnancy that he was head of the CLAPS (Cleft Lip and Palate) team, however, the day before I delivered Ultan I was informed he is not so right now, we don't know who heads up the Cleft Team at QMH).  I didn't' expect to see him.  Actually I woke up from a nap to see him there standing beside Ultan.  He had a pleasant smile on his face, had a quick look at Ultan, said he would see me in two weeks.  I stopped him from leaving and asked him about a NAM.  But, he wanted to wait and talk to me in two weeks but did let me know that he was not in favor of NAM treatment for a unilateral cleft and like that he was gone.

That night, like his brothers, Ultan stayed awake for alot of the night, taking a few cat naps, during the night but mostly was chatting throughout the night.  I wish I could understand the stories he was telling me.  Seán was the exact same 6 years ago and has never shut up since and we love him for it.  I hope Ultan is going to be a story teller like his brother - he certainly has started that way!



The next morning also saw me entering my 32nd hour of being starved and as I had the drama of terminating the childminder, I hadn't eaten the previous evening so technically I hadn't eaten for over 40 hours.  I was starving and can honestly say that I have never felt so hungry since I did a 24 hour fast for Concern when I was  a teenager!  The staff would not even allow water and considering my drip had fallen out the previous day, I was technically been starved.  The worst part was that I was not allowed pain killers while I was not allowed water.  I did my best at begging and had actually started asking for pain relief at 3pm the previous day.  But throughout the night and the following morning, I felt extremely uncomfortable, the worst of all my 3 c-sections.  With the other 2 c-secitons, staff made sure I had no discomfort but QMH, I was starved and was not allowed pain relief while being starved - vicious vicious circle.  So, at around 9AM I woke up from a nap with Ultan in my arms and I saw a vision at the end of my bed.  Any of my Irish friends will understand when I say that I instantly knew it was from Yvonne.  Yvonne is from Cork in Ireland and she is our Nigella Lawson in Hong Kong.  She is a genius with food.  This picnic bag was literally my life line but damn, it was out of my reach and I didn't have the strenght to get to it.  This was an emergency or at least my body reacted that way and automatically pressed the nurse bell 3 times!  Ultan was put back in his cot, the bag was passed to me, the curtain was pulled and I was transported to the Ritz as I tucked in to Irish Breakfast Tea and assortment of homemade scones along with other goodies.  It was just heaven to have food again.  My doctor arrived at 10 and informed that she would start me on small amounts of water and if I did OK I would be allowed eat that evening.  I smirk as I informed her of my Irish Breakfast and sounded rather assertive when I requested pain relief NOW!  Acting shocked she wanted to know who would allow me to eat - Girl, surgery was over 24 hours ago, fasting began midnight previous, how long do you need to starve a patient for - SERIOUSLY!

As you can see from above, we had nothing to worry about with Ultan.  He was feeding well and doing everything else babies should do.  So, it was music to my ears when I was told I would be discharged just 48 hours after surgery - YAY - we are going home!!!  

Friday, 21 December 2012

Day Before D-Day.... By Eimhear


Four and a half years ago I was preparing to have a c-section to deliver Kai.  This entailed a quick trip into the doctors office to give a blood sample the day before the scheduled c-section.  In Queen Mary Hospital, you are admitted for the whole day for effectively the same thing.  I arrived at 9AM, was given my pink pj's and shown to my bed, which because it is the year of the dragon and ridiculously busy, my bed happened to be in the hallway giving me equal view of patients recovering from delivery and patients who were in labour but hadn't reached the crucial 4cm to allow them into the labour ward where all the nice cocktails of pain killers are!

Although I felt on display in the middle of the hall, I was rather contented looking through Xmas magazines planning what I would bake and cook this year - I swear, my memory sucks, because I had completely forgotten how little time you have with a new born and here I was planning lovely little family xmas projects where in reality, since Bryo was born, if we are all watered, washed and fed, we have had a successful day!  1130 I started rumbling about being forgotten and when would my blood be taken.  30 seconds later it was done.  Great, I can go home :)  NO, you have to wait for the anaesthetist to come around and meet you (which happened to be another 6 hours!!!!!!!!).

My stay was so much calmer than week 35 when I thought I was in pre-term labour.  But, leaving aside dealing with pre-term, I felt I wasn't prepared enough to deal with feeding Bryo when I was at week 35. At 35 weeks I was nervous, very nervous about Bryo being born and being hungry because his mother was unable to feed him.  After I was discharged from the week 35 scare, I got to work researching and asking for help.  Joanna Chu from HKCLAPA and a HK Mom came to my home and spent the morning with me showing me how to use the Pidgon bottles, reassuring me and giving me confidence.  I also got in touch with Great Ormond Street Hosptial in London who have a full time feeding specialist who deals only with clefts.  She shared incredible information with me which I will write about when I write my feeding post.  So between the 3 ladies above, I felt confident and prepared.  The closer I got the delivery, the less I thought about the 'medical' side of things and when it came to the day before, all I could imagine was Bryo taking his first breath.  Letting out a roar to let me know all is OK!  But I also had 3 things to distract me during my day - let me share...... 

1. The Consent Forms.  'Here are you consent forms to sign'.  Like any other medical consent I have been given when I gave birth, I put it one side - because, lets face it, it is not like I am going to call in lawyers to negotiate the details within the contract.   BUT, in the Queen Mary Hospital, your consent form is read out to you - out loud!  I tried to stop the Resident Doctor, explaining that it wouldn't be necessary, I will sign but it is 'hospital policy' for a doctor to read it out to you.  So, I had two and half pages of how I can die and get harmed seriously during a c-section!  Are they trying their best to give me an anxiety attack! In hindsight I should have pretended that Chinese was my first language and asked for it to be read to me in Chinese!

2. NICU - Casually at the end, she mentioned that when my baby is born he will be brought to the NICU (Neonatal Intensive Care Unit).  

Me: Why?  
Doctor: Because your baby will be born with a cleft lip and palate. 
Me: Yes, but we know our baby is healthy so why does he need Intensive Care. You can ask the cleft nurse to come to bed side please?
Doctor: We don't have a cleft nurse
Me: Well, can you ask the feeding specialist to come to my bed side
Doctor: We don't have a feeding specialist
Me: So why do you want to send my baby to Intensive Care?
Doctor: So we can figure out how to feed him?
Me: He is not an experiment, he is my Son and I will feed him. And why would I send him somewhere where there is no one trained?!

Doctor unable to know how to handle me goes to nurses station and gets on phone only to come back and tell me that her senior say I have to send my baby to NICU.  The above conversation happened again pretty much verbatim except this time she left and someone more senior returned.  In between, nurses were sent to me

Nurse:  You must follow Doctor's way
Me: Doctor must talk sense to be followed!

repeat above many times........

Eventually when I saw that many of them were panicking unsure how to deal with Gweipo display in the middle of the hall, I agreed that if my baby was born ill I would send him to NICU.  It seamed to ease their pain a little.

In the meantime, 6 hours later the anesthesia turns up and picks up the 8 page consent form and off she goes.  I stopped her, obviously patience running low and asked for a little common sense.  If anything goes wrong you will put me under a general anesthetic - we can talk about it when I wake up.  She agrees.  She makes one last attempt and trying to get me to agree to send my baby to NICU but thankfully she has common sense that when I said it back to her

Me:  The hospital wants me to send my healthy new born son to Intensive Care where nobody is trained to feed cleft babies but they want to figure out how to feed my baby.  Surely a mother knows how to feed her baby better than untrained professional.  

Thankfully she agreed and let me alone while I ran out the door before they changed their mind about letting me home to sleep for the night.  As soon as I got out of the lift I phoned Mark telling him of our Plan B (he didn't' know we had a plan A).  Mark, if they put our son in NICU tomorrow you are to discharge him immediately and go to the Adventist Hospital.  Mark's head is spinning but I ask him to trust me on this one!

3.  I return home to find that my child minder has committed a gross misconduct act for the second time in 13 days and I have to fire her 12 hours before my scheduled c-section. SERIOUSLY!

For all our friends and neighbors who rallied around us to get us through the delivery and first weeks at home and you all know who you are - we THANK YOU so very very much XXO

  

Wednesday, 5 December 2012

The little man

Ultan is a complete star and we are so happy to have him join us on the outside! We cannot now imgaine him not being in our lives before he came along.

We promise to put down some initial thoughts and reactions and the story of his birth as soon as possible.

Tuesday, 4 December 2012

Ultan arrives

We are extremely happy to finally announce the arrival of our third son Ultan, Jian Tor.

Ultan was born Friday 30th November at Queen Mary Hospital, Hong Kong weighing 3.16kgs with a complete cleft lip and palate.  

As some of you may know, Mark was born in the province of Ulster, Ireland making him an Ulsterman!  Ultan which means "Ulsterman" in Irish was inspired by his Daddy's birth place in Ireland.  Jian  is a nod to his Chinese birth place and means strong, unyielding, resolute, unbreakable.  Tor which means hill top in Irish signifies reaching the summit of this journey to meet our Celtic Dragon! 

The Lowry Cummings Family are very much looking forward to Christmas this year cuddling up at home as a family of 5 :)  In the meantime we urge you to stand up for the Ulsterman and toast to his Good Health!

Love, 

Mark, Eimhear, Seán, Kai and Ultan xxo

PS: We will be writing more soon! 

Tuesday, 27 November 2012


Preparing Bryo's cocktail bar for the hospital!  Will let you know which cocktail shaker worked best :)

Monday, 26 November 2012

Amazing coincidence

I had a business meeting arranged last night with an Irish contact visiting Hong Kong. He was keen to adjourn for drinks. I was not one for refusing. We got to discussing kids and, guess what, his first child was born with a large cleft in his palate! Such a small world sometimes and this is where I concur with Eimhear: when you reach out to the universe it can only but help you and will respond.

There were so many parallels in our lives that we could have been separated at birth.
Freaky coincidence.

Anyway, the long and short of it was that we got more tips from someone who had recently gone through it. The main tips were really about how it is absolutely useless to worry. The feeding will get sorted out, the surgery will get done and any other issues we might face, say with ears, speech, dentistry will be relatively minor. A great confidence booster as we come to the last few days pre-delivery.

What about that!

Sunday, 25 November 2012

The Longest Pregnancy

Due to the myriad of emotions that have accompanied this pregnancy and journey towards birth, due to the fact that the pregnancy and its effects has completely dominated our lives, I am chalking this down as officially the longest feeling pregnancy ever..... We have had that initial amazing feeling of being pregnant, but due to our previous 5 miscarriages that was immediately followed by worried, nervous; we have had first trimester sickness, threatened miscarriage, bed rest, then finally some good news - a good 13 week scan; but then as has been the sequence in this pregnancy, within days Eimhear gets ill with an extremely severe flu, while I am thousands of miles away and she is on her own (well, save her wider family) in Ireland, with Sean and Kai. Then she gets better and is able to bring the boys to Italy where we enjoy a great holiday feasting on the best of local food and wine in Umbria with friends and family. Again, we take control of the pregnancy briefly, but upon our return to Hong Kong, we get the news at our 20-week scan, followed by the anxious wait for amniocentesis results. This pregnancy has completely dominated our lives. Not for us the stuff of magazines and adverts where pregnant Mum hangs out with adoring older siblings to be. Their Mum has been in bed or on the couch and now Eimhear has had the two overnight visits to hospital, with suspected labour, then the dehydration of the vomiting bug. She feels good for a matter of hours at a time, then typically does too much nesting, organisation and not enough resting, so will then feel like crap again for a day or two afterwards. It is like we cannot catch a break and have any relaxation. It feels like the pregnancy has been going on for years at this stage. But, we are nearly there. We are now talking days until we get to meet Bryo and that is really exciting. Relief is one thought, but these last few days while the suspense is building and we head into the great unknown of whether the palate is involved and what the feeding is going to be like are also going to be filled with nervous anxiety.

We can't wait to meet him, we are hoping that his palate is intact. We are preparing for the fact that it might not be and have numerous cleft feeding bottles to try out. Eimhear will talk on this no doubt in due course.

The third wee man in the house is not yet here and I am already knackered and the sleep-deprived nights have yet to start! I think I will head to bed now and try and catch some extra zzzzs before the wee man arrives! Not long now. Thank God is all I can say.


Tuesday, 20 November 2012

Week 37! by Eimhear


I have a history of making big babies.  Seán was born 10lbs 4oz and Kai was born week 37 at 9lb 7oz so I was convinced that one thing I could give Bryo would be a good start with his weight.  Since the pre-term labour scare I have been losing weight.  Music to my ears on a normal day but not when I am growing a wee man! My diet has not changed and I am conscious to eat enough as my goal is for this man to gain as much weight that is safe for him (& me) to handle. Dr Hon doesn't appear to be concerned and puts it down to the stress of the pregnancy.  Thankfully my week 36 scan shows Bryo is still growing - estimated weight to be 3.1kg 6.8lbs.  So, I won't get him to 10lbs or anywhere near that.  I take it as a defeat which makes Mark and Dr Hon laugh.  I have an almost 7 lb baby in me at week 36 and I am disappointed because it is small.  Dr Hon is quick to tell me to get over myself and point our that Seán and Kai's weight were 'abnormal' and I was carrying a 'normal' weighing child.  OK, I will get over myself...maybe!!

A few days after this scan I was readmitted into hospital to be treated for dehydration from the vomiting bug - again "universe, are you kidding me???"  Anything else you would like to throw at me because you are running out of time?!  I have been out of hospital 2 days and had a scan today.  Firstly my weight is more of an issue as I am losing kilos at this stage.  No problem if it doesn't affect the baby but the scan has given the estimated weight of the baby as 2.8kgs.  Bryo is loosing weight because his mother is not getting enough into her.  Lets say, it doesn't feel good to know that your Baby is not growing because you are not nurturing him - it doesn't feel good at all!

A conversation that has been going on for weeks is about the timing of the delivery.  As both Seán and Kai were delivered by c-section, Bryo will also.  I have chosen to deliver in Queen Mary Hospital so I will have access to the support of the CLAPS team - especially when it comes to feeding.  Ideally I would love for Dr Hon to deliver me but am worried that the private hospital won't have the support that I will need for Bryo.  The QM Consultant is very conservative in her opinions and one thing which she talks about a lot concerns Caucasian babies not developing their lungs until later in the pregnancy compared to Asian - and yes, there is scientific research which states this.  It is for this reason that she won't bring my delivery forward.  Why Caucasian Babies are born in the West before week 39 but are 'not' in QMH is beyond my medical comprehension but so be it.  I know that Dr Hon would deliver me week 38 if he was in charge and now that Bryo is losing weight it makes sense to get him out here where we can feed him.  Did I make the right choice to deliver at QM????  It is not even worth asking this question - it is too late, for it is the Year of the Dragon and all private beds are filled now!

For now I am off to eat the kilo box of Belgium chocolates - Thank you my Brussels friend for contributing to Bryo's weight gain programme!

35 weeks pregnant... by Eimhear


One thing that this pregnancy has been consistent with is that it is consistently eventful.  Be it the threatened miscarriage, flu, 20 week scare the byjaysus out of us scan, diagnosis of cleft lip, diagnosis of dilated kidney, contracting uterus.  So it should have not have been a surprise to me when I woke on a Friday morning 35 weeks pregnant with signs that I was in labour.  Are you kidding......  I was screaming at the universe in my head and the tone of the conversation is not suitable for the public domain. I never once stopped and thought that I would have to deal with a pre-term baby or that this baby would have to deal with the challenge of pre-term.  Seriously, I am not impressed at all......  Thank God for friends who just jumped in and took care of Seán and Kai while Mark and I took off to Queen Mary Hospital.  I was scared, very scared, scared that my wee man would be set yet another challenge that may come with being pre-term.  I am sure that it was this fear that shot my blood pressure up which immediately caused alarm amongst the nurses.  As it happened we had an appointment in QMH to meet with the urologist about Bryo's kidney.  Our OB consultant arrived asked for us to come meet with him - Mark's thick Northern Irish accent came out as he put his red hand of Ulster up telling her where to go..... I could see he was stressed and why wouldn't he.  I had a quick look around thinking to myself - 'gas and air for Daddy'!!! Thankfully the labour didn't progress but it now feels like a time bomb - any moment this wee man will be coming - I need to go home and pack my hospital bag! 

Thursday, 15 November 2012

Who is who.....


We would highly recommend our OBGYN Dr Edmund Hon www.wellwoman.com.hk who has been on this journey with us for years.  I think when a Mom trusts her OB with her baby's life and and a husband trusts his wife's life in the OB's hands - you have a circle of trust.  He is extremely generous with sharing information and listening to concerns. His honest and humanistic approach has always been a welcome relieve to both Mark and I. 

First point of call after being diagnosed should be the Hong Kong Assoication for Cleft Lip and Palate www.cleftlip.org.hk/?lang=en.  Set up by Joanna Chu who found it difficult to source information after her daughter was born with a bilateral cleft lip and palate 20-odd years ago.  Joanna who is a fountain of information met with us and we found our initial meeting was invaluable to us.  We had the opportunity to see before and after photos and let's be honest, this is what we wanted to see.  Well, I wanted to see photos.  I wanted to know who every surgeon was and what they were capable of.  Joanna will put you in touch with parents who are going through the same journey and also will support you through your journey.

We have chosen Dr Lam Lai Kun to give Ultan his second smile.  We have written about our first meeting with Dr Lam before on our 'relief' post.  Our thoughts on that first meeting is also copied at the bottom of this post. Plus, you will read a lot about and see his work as Ultan goes through his journey.

In Ireland it is more GP orientated care system and I don't normally have a Pediatrician  for my children.  However, I didn't want to bring Ultan to a doctor who may or may not have seen a cleft before or if they did it would have only been while training.  Therefore we choose Dr Barbara CC Lam who was the consultant in charge of the NICU unit in Queen Mary Hospital for many years before she went private in 2007.

A good friend of mine introduced me to Dr Valerie Pareira Phd (Impact of maxillary osteotomy on speech in Cleft Lip and Palate).  Valerie has worked for more than 10 years as a specialist speech and language therapist in Cleft Lip and Palate in Great Ormond Street Hospital, London working with infants, children, adolescents and adults with a cleft condition. Valerie's work has been published in Cleft Palate Cranofacial Journal and she is also written/co-written book chapter in the field.  She has been a great support to me since I was diagnosed and I know she will be going forward after Bryo is born.  We are very lucky to have her expertise here in Hong Kong.  If you want to contact Valerie, email val_j_p@yahoo.co.uk



A list of Cleft centers and surgeons in Hong Kong supplied by HKACLP

Cleft Centres in Hong Kong:


Hong Kong Island
: Queen Mary Hospital / The Prince Philip Dental Hospital
Kowloon
: United Christian Hospital / Kwong Wah Hospital
New Territories
: Prince of Wales Hospital / Tuen Mun Hospital

Surgeons in charge of Cleft Centres at Public Hospitals 

Surgeons in charge of Cleft Centres at Public Hospitals 


Name
Surgeons in charge
Specialty
Queen Mary Hospital
Dr. Li Kam Hop, George
Plastic surgeons
Kwong Wah Hospital
Dr. Leung Mei Yee
Plastic surgeons
Tuen Mun Hospital
Dr. Choi Wing Kee
Plastic surgeons
United Christian Hospital
Dr. Liu Kam Wing, Kelvin
Paediatric surgeons
Prince of Wales Hospital
Dr. Lee Kim Hung
Paediatric surgeons

Private Surgeons 


Name
Specialty
Dr. SK CHOW
Plastic surgeons
Dr. Lam Lai Kun
Plastic surgeons
Dr. Pang Chi Wang, Peter
Plastic surgeons
Dr. Cheung Wing Yung
Plastic surgeons
Dr. TK CHOW
Maxillofacial Surgeon

Hong Kong Multidisciplinary & Holistic Centre for Cleft Lip and Palate (HKMHCCLP) at Evangel Hospital


Cleft surgeon
Dr. SK CHOW (Plastic Surgeon) 
Dr. TK CHOW (Maxillofacial Surgeon)
Anesthesiologist
Dr. Anne Kwan, Superintendent of Evangel Hospital
Orthodontist:
Dr. Tony Lee
ENT surgeon
Dr. Ho Fung, Kenneth
Speech Therapist
Miss Christine Ching

Easing The First Hours Video

The Northern and Yorkshire Cleft Lip and Palate Team in Newcastle, England have launched their new film, "Easing The First Few Hours" (part funded by CLAPA), as part of Cleft Lip and Palate Awareness week.
It is a comprehensive film covering types of cleft, causes of clefting, the care that the baby and child will receive with the cleft team and, importantly, the experiences and advice of parents whose child was born with a cleft lip and or palate. It is aimed at new parents and the health professionals who treat them at the time of diagnosis or birth.


www.cleftline.org
www.widesmiles2.org
www.cleftadvocate.org
www.smiletrain.org - Interview with Brian Mullaney, co-founder of Smile Train
www.operationsmile.org

Thoughts on 3 of the surgeons we met from our 'relief' post!


We are registered with QMH so we got to meet with Dr George Li, Head of CLAPS QMH and consultant plastic surgeon.  My initial impression of Dr Li is that he is pleasant but he is shy.  He doesn't volunteer information or at least he didn't with us so when you do get to meet him I would advise you to be prepared with your questions.  I came away from the meeting liking him and thinking he was a good man but wishing he had made me feel more aware of his vision, his outcomes, what we should expect but he didn't offer anything.  He did answer what was asked of him but no more.   I have to say the majority of the confidence didn't come from my meeting with him.  I spoke to about half a dozen of his previous patients who spoke highly of his work.  His facial expression is stuck in my head when I asked him if he would be sending a member of his CLAPS team to meet my baby once he is born - he looked at me as if I have two heads that I am still not sure if someone will be visiting Bryo.  Surely, considering that QMH have no counselling service once you have been diagnosed, sure they don't let you wait weeks before seeing someone - right?  They wouldn't - would they?  I fear I will turn blue if I hold my breath......

Returning to my stalking efforts of Dr Kelvin Liu - we had put it out there that we wanted to meet with him.  We had spoken to surgeons we knew and asked for word to be passed but he was on holiday and out of the country and was attending seminars, I even saw that Dr Liu was giving a talk on a particular Sunday - only Fellows were invited but I did seriously consider crashing the event!  However, on a different matter, we had arranged to meet with Dr Jennifer Sihoe who is a Paediatric Urologist Surgeon to discuss Bryo's kidney.  During the meeting we made Jennifer aware of our stalking efforts of Dr Kelvin Liu.  Dr Sihoe finding this rather amusing became our stalking angel as she is good friends with Dr Liu and he was coming in to see her that afternoon - result!  That afternoon we met Dr Kelvin Liu and he was a pleasure to meet.  Firstly, he studied in Ireland, albeit he has lost his Irish accent!!! He did his surgical training in Our Lady's hospital Crumlin, Dublin and now he a Paediatric Surgeon and heads up the CLAPS Team in UCH.  UCH deal with approximately 75% of the Cleft cases in Hong Kong.  To my knowledge if you deliver in Queen Elizabeth hospital you will automatically get support from the UCH team.  Dr Liu took his time to bring us through each stage of treatment from birth to teenage.  In effect, he did what QMH should have done when we were diagnosed at 20 weeks.  For this we will always be so grateful to him.

One of the best things about meeting Joanna Chu from HKACLCP was that we got to see before and after pictures.  Consistently when I pointed out amazing work the same surgeon would be responsible for it.  Dr Lam Lai Kun.  Dr Hon referred us to see him and I was excited to meet the man behind so much incredible work.  I do realize that this is a very Irish thing to say but one thing that I do miss living in Asia, is a firm, honest handshake.  They aren't common this side of the world.  When I walked in to meet Dr Lam, his handshake and eye contact was instant.  He was so warm and instantly offered insight in his views of treatment.  He was the first who spoke about different treatments but not to decide on which area to go until we meet our son.  He was talking about individual treatment - something that was high on our wish list.  Without prompting he discussed the difference between the Asian and Caucasian time lines - again a huge wish on our list.  His repeat surgery was 0% - another big tick on our list.  And he believed in as few surgeries as possible - my goodness, this man is reading our wanted list.  On leaving his now standing room only waiting room (he spent a long time with us), and as we walked to the lift, Mark looked at me through the corner of his eye and said - "he has a good handshake".  Those 5 words said so much to me.  Was Dr Lam to be the surgeon who would be a huge part of our lives?!