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?!
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