Preparing Bryo's cocktail bar for the hospital! Will let you know which cocktail shaker worked best :)
Tuesday, 27 November 2012
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!
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.
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.
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!
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?!
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?!
One for the Album.....? ....By Eimhear
I got it in my head that I wanted to have a 4D picture of Bryo for our album but also to show other parents who have been diagnosed. I asked our consultant at QMH but she declined to give us one so Dr Edmund Hon arranged for us to meet with Dr Lam Yung Hang. I assumed that we would arrive, see Bryo, picture would be printed and I would be out of his office in 10 minutes - how wrong was I. Dr Lam did a complete scan and attempted to get a 4D facial picture of Bryo but Bryo was having none of it. But Dr Lam was having none of it either and wasn't willing to give up on getting the picture which I really appreciated. We kept on taking breaks, I was given numerous chocolate bars to eat (not that I complained), Kai was given the same amount. In total I was in his office for just under 3 hours....... and NO, I didn't get a picture to show you. I got it, Bryo wants his privacy. The poor boy has been watched and poked from the moment we knew he existed that maybe he was saying enough was enough.
Two items that Dr Lam did confirm was he didn't believe the baby had duplex kidney but either a blockage on entering the bladder on the left side or reflux on the left side. He was very reassuring that it wasn't serious and that worse case scenario key hole surgery would have to be performed when Bryo was about 6 months old - seriously another surgery - are you kidding!. The other matter he confirmed was that Bryo has a cleft palate. It was something we knew likely, 70% likely actually but I had hoped, prayed, wished, that the palate would not be involved because if the palate is involved most likely the avelor is involved and all of this involves more surgeries.
I can't lie, I felt like I was hit by a bus with this information. It floored me and I was thrown into complete grief for days. It was at the forefront of my mind and I just did not want to deal with the day. What genes had we given our boy for him to have to go through all of this? Why has he to through this? I just wanted to be able to take all of his future pain so he would never have to experience this but for now we are looking at 3 surgeries in Bryo's first year of life and I am devastated by this.
Mark, as always, trying to be confident upbeat about this latest news. The motto is "we deal" and yes we will face and deal with whatever is thrown at us. He may be trying to verbalize his confidence, his eyes tell a different story and I know he is devastated as well. He hasn't swam all week since we found out and he is a man who loves to swim. But lets be honest, if you are going to be broken then I think news that your child needs numerous surgeries will break you. For I have allowed myself to grieve this information and have come out the other end ready to be with my Son on his journey whichever route it takes.
Relief....by Eimhear
Relief
Our Son is healthy. Yes, we are having another Boy and he is healthy. My goodness, what a journey he has gone on already. I am convinced he has his Dad's personality of ignoring the external factors which do not interest him. I hope he will pick up his Dad's personalty as his Mom has passed nothing but anxiety and worry on to him - I think he is ignoring me, at least that's what I hope!!
I think Mark and I are both really lucky to have the awareness of clefts not to be worried for our baby - I have already embraced it. I am sure there are many parents around the world who would wish that the only health challenge that their child had to face was a cleft lip. Saying that, it doesn't mean that I am not emotional for what my Son has to face. You are guaranteed to see a tear trickle down my cheek when I imagine the moment I have to hand my Son over for surgery. I don't fear for my wee Man, I think of the most bizarre things which I cannot control, like whether the surgeon had too many glasses of fine claret the night before or had argued with their wife that morning....
I am finally coming to terms with the fact that this is not my journey or Mark's journey, it is our Son's journey and he will face experiences that many won't experience in a life time. Our job as parents it to make sure we choose that best team. So what took us about 10 weeks to collate, you will get in one post (who is who post!) - the whole point of this blog.
We have been so fortunate to have Alex Cash, Lead Cleft Lip and Palate Consultant Orthodontist from Guys Hospital in London as a support system for us on this journey. His informative, calming emails were a god send at a time when we were gathering information. On choosing the right team, this wise man wrote to us:
"If I were in your position I'd be very keen on knowing as much about outcomes as possible. Don't be influenced by the teams surgeons background speciality - plastics, max fac, ent and paediatric surgeons all offer care. Just be focused on the people you feel comfortable with, who's outcomes are as good as possible. You want to know principally about aesthetics, speech, growth and repeat surgical rates - and not necessarily in that order. You'll want an outline of what surgeries / interventions to expect and when although the precise diagnosis will enable this in a more focused manner. Ideally a surgeon that operates as little as possible and allows as much natural growth and development is good too."
This piece of advice I am keeping close to me as we make our decision.
I should mention that we didn't go and see the Hong Kong Association of Cleft Lip and Cleft Palate (HKACLCP) first and hence were chasing our tails a bit in trying to find information. An example of this was a lovely friend of ours in Hong Kong wrote to a friend in New York and it was through a New York office that we found out about the CLAPS team in UCH. I immediately went on a man hunt for Dr Kelvin Liu - we are talking on the verge of stalking the man. More on that later. As parents we were shocked by the lack of knowledge and support that was coming from QMH. In the UK, once you are diagnosed, you are contacted by a cleft nurse within 24 hours usually by them calling to your house. In Hong Kong, I think what was expected of us as parents was to wait until the Baby was born and let them do their job, but, we weren't willing to wait and see what happens. This was our child and it was our duty as parents to be proactive and prepared as possible. Plus we weren't going to be handing our child over to just anyone. I needed to know we were handing our child to the best hands, who had the best success rate, who had the best vision and was open to treating our son as an individual. I never thought that I would be interviewing plastic surgeons for my unborn child but now that I am, I was surprised by how much I stared at the surgeons hands when I met with them. Looking for a shake, wondering bizarre thoughts like do they drink whisky, looking at their aesthetics looking and hoping for signs of OCD....
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?!
Our Son is healthy. Yes, we are having another Boy and he is healthy. My goodness, what a journey he has gone on already. I am convinced he has his Dad's personality of ignoring the external factors which do not interest him. I hope he will pick up his Dad's personalty as his Mom has passed nothing but anxiety and worry on to him - I think he is ignoring me, at least that's what I hope!!
I think Mark and I are both really lucky to have the awareness of clefts not to be worried for our baby - I have already embraced it. I am sure there are many parents around the world who would wish that the only health challenge that their child had to face was a cleft lip. Saying that, it doesn't mean that I am not emotional for what my Son has to face. You are guaranteed to see a tear trickle down my cheek when I imagine the moment I have to hand my Son over for surgery. I don't fear for my wee Man, I think of the most bizarre things which I cannot control, like whether the surgeon had too many glasses of fine claret the night before or had argued with their wife that morning....
I am finally coming to terms with the fact that this is not my journey or Mark's journey, it is our Son's journey and he will face experiences that many won't experience in a life time. Our job as parents it to make sure we choose that best team. So what took us about 10 weeks to collate, you will get in one post (who is who post!) - the whole point of this blog.
We have been so fortunate to have Alex Cash, Lead Cleft Lip and Palate Consultant Orthodontist from Guys Hospital in London as a support system for us on this journey. His informative, calming emails were a god send at a time when we were gathering information. On choosing the right team, this wise man wrote to us:
"If I were in your position I'd be very keen on knowing as much about outcomes as possible. Don't be influenced by the teams surgeons background speciality - plastics, max fac, ent and paediatric surgeons all offer care. Just be focused on the people you feel comfortable with, who's outcomes are as good as possible. You want to know principally about aesthetics, speech, growth and repeat surgical rates - and not necessarily in that order. You'll want an outline of what surgeries / interventions to expect and when although the precise diagnosis will enable this in a more focused manner. Ideally a surgeon that operates as little as possible and allows as much natural growth and development is good too."
This piece of advice I am keeping close to me as we make our decision.
I should mention that we didn't go and see the Hong Kong Association of Cleft Lip and Cleft Palate (HKACLCP) first and hence were chasing our tails a bit in trying to find information. An example of this was a lovely friend of ours in Hong Kong wrote to a friend in New York and it was through a New York office that we found out about the CLAPS team in UCH. I immediately went on a man hunt for Dr Kelvin Liu - we are talking on the verge of stalking the man. More on that later. As parents we were shocked by the lack of knowledge and support that was coming from QMH. In the UK, once you are diagnosed, you are contacted by a cleft nurse within 24 hours usually by them calling to your house. In Hong Kong, I think what was expected of us as parents was to wait until the Baby was born and let them do their job, but, we weren't willing to wait and see what happens. This was our child and it was our duty as parents to be proactive and prepared as possible. Plus we weren't going to be handing our child over to just anyone. I needed to know we were handing our child to the best hands, who had the best success rate, who had the best vision and was open to treating our son as an individual. I never thought that I would be interviewing plastic surgeons for my unborn child but now that I am, I was surprised by how much I stared at the surgeons hands when I met with them. Looking for a shake, wondering bizarre thoughts like do they drink whisky, looking at their aesthetics looking and hoping for signs of OCD....
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?!
Cleft Journey.... by Eimhear
This idea to blog our Cleft Journey was born from the loneliness we felt when trying to find out about a cleft journey in Hong Kong. We had been given access for what felt like this exclusive club but were randomly knocking on doors around Hong Kong to see which one would let us in. It felt only obvious to share our journey so that you the reader who may have been diagnosed today will know, who is who in HK, where to find them and how the system works.
So, I am Eimhear (pronounced ee - mer), an Irish Cailín living in Hong Kong, married to a George Clooney look a like Northern Irish Man (aren't I the lucky girl!) and Mom of three amazing energetic, creative boys. Two I have met, my third boy will be making his appearance soon however we know so much about our wee Man already, I know how incredible he is going to be. This pregnancy was never going to be a 'normal' pregnancy. On our journey to expand our family we have experienced the loss of 5 babies which would need a whole other blog to explain that journey. However, having had 2 normal pregnancies, I know what it is to expect from a 'normal' scan.
Our pregnancy journey for our 8th pregnancy started off with an immediate threatened miscarriage. I was put on strict bed rest for 2 months. Not too bad you may think! For many years I would wish to lay in bed, have the time to read those books on my wish list, catch up on my 'to do' list, watch that box set. So here I am, having been granted this time and I can't even stay focused on a magazine article. Even arriving for my doctors appointments and having the wand placed on my tummy and to see the flashing heartbeat of my little baby only gave me relief for the briefest of moments for we knew that we still had a mountain to climb. The big challenge was to get to 12 weeks and we did it. I was so proud of my little man. We had a scan at 11AM and at 11PM I was boarding a plane to fly to Ireland with my 2 boys and bump to celebrate a family birthday. The relief was short-lived - 13 weeks pregnant - fell ill with severe flu. Terrified for my baby I don't think I knew the consequences until I returned to Hong Kong 7 weeks later. The professor who is in charge of my care in Queen Mary Hospital wanted to know the strand of virus I had. This did make me smile, for I was diagnosed in my local GP surgery in the West of Ireland where you are told you have a virus, go to bed for a week. Not like HK where investigations into specific strands are done.
The following day I was scanned in the high risk unit with an emphasis on the fact that I had a flu. I was not in the slightest bit worried as only a few days earlier our private OBGYN Dr Edmund Hon had conducted a 20 weeks scan and had given us the report all parents want to hear - all was well. He mentioned that when we were having our QM scan to let them know that he couldn't see the baby's face - I didn't think anything of it. So as I lay on the scanning bed, I felt very confident that the report would be positive - why wouldn't it?! The atmosphere is the room of the QMH consultant is a world away from what we are used to with Dr Hon. Dr Hon talks his way through the visit explaining everything clearly - not the style of the QM consultant. The wand touched my stomach and within minutes I knew the this was no normal scan - one would think that when your doctor has been scanning your Baby's heart for 17 minutes. I could feel a tear release from the corner of my eye as I realised that there must be a hole in the heart. There is pretty much no communication and when I asked her what she was looking for she asked me to be patient, quiet and let her do her job! She moved on with the scan and at one stage when I looked at the scan I asked if that was a cleft lip - she replied "Yes"! My initial thought was - thank god, as least a cleft lip can be repaired easily. Nearly an hour later the scan finished bar being told to be quiet and Yes to the cleft lip question we had not had any comments from her. I sat up and she started listing off ailments that she had seen on the scan. To mention a few, no stomach or abnormal tiny bubble, duplex kidney, shortened femur, cleft lip +/- palate - putting all these together she said that she believed our Baby was very sick. She offered me a termination - I froze, my eyes widened almost popping out of my head. I asked if it was that serious - her reply was that everything would indicate that our baby was very sick and may not survive. Chromosomal abnormalities were mentioned. She offered an amniocentesis which we accepted as I thought if my Baby will not be able to survive outside utero I want to know. I never had amnio before and fearing that I was burst into tears which would cause the needle to enter my baby I had to export myself mentally by playing a camogie game like I used to when I was teenager.
At home, I shed too many tears to count. I initially thought had I pushed nature. This was my 8th pregnancy - should I have given up long before. Mark had the iPad out looking up some of the Chromosomal abnormalities mentioned which confirmed that Babies with such abnormalities would not survive outside the womb. We got on to Dr Edmund Hon - how could a matter of days produce such different results. He was, as always, incredible in talking sense and making sense of such a report. Always the professional, he was very careful on how he disagreed with the QMH scan but he was very confident that he saw a healthy baby and that I was carrying a healthy baby. He was aware that we weren't worried about the cleft and he is from the school that a cleft is completely reversible with surgery. All we could do is wait and see what the results would show. From the moment we left her room, Mark was incredibly confident in our son. He immediately stated that he didn't believe her findings. He saw his Baby kick at 7 weeks and knew from that moment what a strong baby this would be. He believed from the very beginning that she was an alarmist with cold clinical bedside manners and had decided that he was going to fall on the factual, humanist side that was Edmund Hon. Even when he would return from work and find me curled up in a ball on the bed crying, he would anxiously ask what was wrong - he genuinely had forgotten and put it out of his head what she had told us and completely moved on. I wish I had his confidence!
A few days after the scan Mark and I were invited back to take part in an array test which tests the genes within the chromosomes. We gave blood to an incredible nurse who was so gently and quietly mentioned to us, cleft lips are easily repaired. This nurse would prove to be an angel to us because as our baby's results popped up on the screen, she would phone me off the record to inform me. We even met with the consultant in the hospital who told us the results were not back yet, however, we had gotten a call from the nurse days earlier to confirm all results were clear. Fearing that we may get her in trouble we zipped our lips and confirmed we were happy to wait..... 8 days later the doctor confirmed that we were carrying a healthy baby. There was never any reference to her scaring the bejaysus out of us that our baby was not going to live.
Let me update you on some of the findings - the no stomach/small stomach was in fact our baby's empty stomach, he just hadn't eaten before the scan! The shortened femur was because of the inaccurate due date put in the system throwing all of the babies measurements out by weeks. We were reassured that dilation of a kidney in utero is extremely common and because the renal system was working - we had in fact had an amnio which is essentially withdrawing baby's urine from the womb - something that would not have happened if the renal system was not working - this was becoming something that we should not worry about until after the baby is born.
So People, the big lesson for today is, always, ALWAYS get a second opinion and even a third opinion if you can.
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