筹划逾十年，香港儿童医院终于如期启用。这也是我们的第一个圣诞节，感觉别具意义。开院当天，我在专科门诊向病童送上义工制作的节日汽球，又看到他们与志愿团队玩到不舍得离开，仿佛忘记自己身处医院。新闻报道传来家长对我们设施和服务的正面评语，隔天又有医生自发扮圣诞老人派礼物。这一幕幕温馨画面，令我既感动又感恩。
专科门诊服务顺利开始的同时，我亦要提醒市民，香港儿童医院是负责诊治严重复杂的个案，因此不设急症室或普通科门诊。即是说，病人须按临床情况经医生转介，再事先预约。如小朋友患上流感、肠胃炎等较轻微病症或不幸遇到意外，应到其他医院或诊所求医；而开院头数月我们只处理覆诊旧症，直至今年住院服务陆续开展，有关专科才会接受新症转介。
为了传达这些重要讯息，我们会加强与公众、服务使用者和医疗业界的沟通。其中各科的转介指引会逐步上载医院网站。我亦计划开通网志，与同事分享所想。
医院的地址是「承昌道一号」，听起来与「成长道」很相似。我一直希望我们能成为一间充满关怀、学习精神和微笑的医院。随著临床服务相继开展，但愿这些种子与我们的病童一起茁壮成长。
香港儿童医院行政总监李子良医生
香港儿童医院 2018 年 12 月 18 日正式启用。其中肾科、血液及肿瘤科、先天性新陈代谢科的专科门诊，与及病理科、放射科及药剂部率先投入运作，为符合指定临床情况的病童提供服务。
开院第一天有九名来自玛嘉烈医院儿童肾科的病童前来专科门诊覆诊。连同玛丽医院及威尔斯亲王医院儿童癌症中心转介的旧症，暂时已有超过 260名病童预约覆诊。专科门诊亦会跟进政府「初生婴儿代谢病筛查计划」下化验结果异常的婴儿。
医院其他专科的门诊及住院服务2019年起陆续开展，包括肿瘤科、肾科、小儿外科、儿童深切治疗部、新生儿深切治疗部、心脏科及心胸外科。
我负责在缴费处替病人登记。开院前我们演习了整个覆诊流程，感恩首日运作十分顺利。希望其他专科可尽快投入服务，令更多病童受惠。
我和一班同事努力多时，合力购置家具、仪器以至玩具。看到门诊终于启用，令我十分感动。有家长甚至要求我们将其他专科的覆诊期转来儿童医院呢。
为了令抽血过程更流畅，我们为抽血室的桌椅和工具摆位作了一番调整，亦准备了贴纸及糖果，奖励勇敢面对抽血的小朋友。
我们为医院装设电脑及网络系统，令临床运作更智能化。看到自己的工作能够帮助病童，感到很开心。
这间医院很漂亮，很舒服。
医院的设计很好。登记、见医生、验血、照超声波和取药在同一大楼的上下层，比较归一方便。今日的流程很快捷， 医护人员非常友善，等候期间又有图书看。香港有这些设备应感到自豪。
上期《通讯》预告香港儿童医院将支援全港「初生婴儿代谢病筛查计划」，其中化验服务已于去年十月顺利开展，成为医院的先头部队，而新陈代谢科亦刚投入服务，跟进治疗有关个案。另外，衞生署医学遗传科预计 2019 年底迁入。日后相关不常见疾病的检测、诊断、治疗及家庭辅导将集中在本院，为患者提供一站式支援，专家们亦可累积经验，并为研究发展奠下基础。
病理学部顾问医生麦苗一直参与代谢病筛查的筹划，包括将检测仪器由玛嘉烈医院和仁济医院迁移至本院。她说︰「这计划是给婴儿宝贵的生日礼物。无病固然是好消息，就算不幸确诊，亦可立即展开治疗。化验只需几滴血，但结果却是天渊之别，足以改写宝宝一生。」
她忆起自己很久以前在化验室对著一份报告叹息的往事︰「当时我们验出一名幼童患有苯丙酮尿症，但毕竟太迟发现，已经损害了智力而很难挽回，很心痛。」苯丙酮尿症正是现时筛查计划涵盖的 24 种代谢病之一，只要及早给予药物及营养治疗，就能减低对身体器官的破坏。「对社会来说，这些病或者属于罕见；但对于家庭来说，每个小孩都是他们的全部。」
筛查计划下化验结果异常的婴儿，不论在哪间医院出生，都会交由本院先天性新陈代谢科跟进。团队由儿科医生、专科护士及营养师组成。负责领导的许钟妮医生说︰「当家长知道子女患有代谢病都会大受打击。照顾这些小朋友要承受巨大压力，所以他们都是超人父母。我希望告诉他们，医护人员会与他们同行，尽力给予最好的治疗。」
许医生认为，每种罕有病的第一名病人都是医生的老师，教懂他们如何治理将来的患者。以往这些个案分散在不同医院，数量又少，再遇到相同病例可能是十年后的事。「我等了二十多年，终于见到这些病集中在同一间医院治疗，可以累积经验和最新知识，对医生和病人都是好事。」是否美梦成真 ? 她说︰「儿童医院是梦工场，现在踏出了第一步，尚有许多未发完的梦。」
衞生署医学遗传科预计今年底迁入本院，包括人手、仪器与病人。其顾问医生卢辉文相信， 与医管局的专家们「同一屋簷下」有利双方沟通，届时个案转介会更直接，衞生署亦可为住院病人提供即时会诊。
遗传科的工作包括检验及诊断遗传病，过程有如侦探追凶。卢医生说：「面对那些连我自己都未遇过的病，该如何诊断？这是一种艺术。」人体有二万多个遗传基因，其中三至四千个与已知的疾病相关。一般进行临床评估后，会透过染色体分析和基因检测等技术作诊断。对于毫无头绪的个案，甚至要进行全基因组测序。
卢医生当初误打误撞下进入冷门的遗传科，一做便是廿多年，帮助了不少家庭。他说︰「虽然大部份遗传病不能根治，但对于那些看了多年医生都找不到答案的人，能得到正确诊断会有一种如释重负的感觉，不用再猜度自己究竟做错了甚么，会否牵连其他家庭成员等。」
遗传科亦负责提供辅导，医生会向患者解释疾病成因、遗传模式、患病机率及如何预防延至下一代等，让他们作出更合适的生育计划。卢医生认为遗传辅导的挑战性不比遗传诊断小：「要因应求诊者的背景、教育程度、对疾病的掌握、当时的精神状态和心情去耐心讲解。」
香港儿童医院一直希望通过不同方法，为小朋友带来不一样的治疗体验，令他们感受到关怀和希望。其中，我们与香港迪士尼乐园团队花了不少心思，合力为病童创作了一系列集美观、舒适及实用功能于一身的特色住院服装，包括睡衣套装、外套，及接受静脉注输时穿著的上衣。华特迪士尼公司同时慷慨捐赠 410 万元，支持这批服装的制作费用。
项目以「童康服」为名，寓意这些色彩缤纷的服装为病童的住院历程注入欢乐，令他们更轻松面对治疗，踏上康复之路。随著住院服务今年起陆续开展，病童便可穿上这些设计贴心的全新服装了。
米奇医生和米妮护士与医管局总部、九龙中联网及香港儿童医院同事一起出席「童康服」项目公布仪式。
上衣采用侧开设计，方便进行静脉注输，亦为身体提供更佳覆盖，既保暖亦尊重病人私隐。
迪士尼朋友剪影隐藏于大自然背景图案中，鼓励家长、医护人员与小朋友互动，有助分散幼童注意力，纾缓接受医疗程序时的不安。
选用含棉量较高的布料，减少对皮肤的刺激。
警方早前动员 150 人在香港儿童医院举行演习， 以加强双方在紧急事故中的协调及应变能力。演习代号「壮志」，模拟医院保安员于大堂发现数名可疑人物报警，东九龙冲锋队奉召到场。匪徒其后开火并挟持人质，警方随即调派机动部队、反恐特勤队及谈判组增援，并封锁现场搜索及疏散市民，最终将匪徒制服。
香港儿童医院获香港儿科医学院发出临时认证，批准其心脏科、肾科、血液及肿瘤科、儿童深切治疗部，及新生儿深切治疗部成为儿科专科受训医生的培训单位。
香港儿童医院行政总监李子良医生
香港儿童医院麻醉科部门主管袁文英医生
香港儿童医院儿科专科驻院医生陈宇轩医生
香港儿童医院护理总经理温月媚女士
香港儿童医院药剂部部门经理潘文康先生
医管局总办事处机构传讯经理舒瑞珍女士
香港儿童医院行政事务总经理郭慧敏女士
香港儿童医院高级行政主任（对外关系及筹募）杜蕴慧女士
香港儿童医院一级行政主任（对外关系及筹募）董洁欣女士
香港儿童医院二级行政主任（对外关系及筹募）林瑞敏女士
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After over ten years of planning, we have finally opened our doors to patients just before Christmas. It was gratifying seeing the happy faces of children receiving festive balloons made by volunteers, doctor dressing up as Santa Claus and parents' positive comments in the news. My heart is filled with thankfulness.
While the specialist outpatient clinics have opened smoothly, it is important to highlight that there is no accident and emergency department or general outpatient clinic in HKCH, as we are a tertiary hospital focusing on complex cases. Patients need doctor's referral to make an appointment, which means there is no walk-in. Children suffering from injuries or relatively minor illnesses such as flu and gastroenteritis should seek medical attention from other hospitals or clinics. In the initial months, HKCH only provides follow-up consultation for existing patients. New referrals will be accepted when the respective specialties begin their inpatient service by phases from 2019.
We will spread these messages to the public via various channels, like posting referral guidelines on our website. I also plan to start a blog to share my thoughts with colleagues.
As we embark on a new journey with more services to come, let's make a new year's resolution to build a caring, learning and smiling hospital together.
Dr Lee Tsz-leung, HKCH Hospital Chief Executive
The Hong Kong Children's Hospital officially commenced service on 18 December 2018. The specialist outpatient clinics for nephrology, oncology and metabolic medicine, as well as pathology, radiology and pharmacy departments have since begun operation to serve patients with specific clinical conditions.
On the first day of service, nine patients originally under the care of Princess Margaret Hospital's paediatric nephrology team came to HKCH for follow-up consultation. In addition to the existing cases referred by the children's cancer centres of Queen Mary Hospital and Prince of Wales Hospital, more than 260 patients have booked their appointment at HKCH. The hospital will also follow up on babies identified with abnormal findings under the Government's newborn screening programme for inborn errors of metabolism.
Other outpatient clinics and inpatient services for oncology, nephrology, paediatric surgery as well as the paediatric intensive care unit, neonatal intensive care unit, cardiology and cardiothoracic surgery will be commissioned gradually in 2019.
I serve patients at the shroff and registration counter. I am so grateful that everything ran smooth on the first day. I hope other specialties could start service soon to benefit more patients.
I feel so touched seeing how our preparation and teamwork pay off. Some parents even asked to change their appointment under other specialties to HKCH.
We spent quite some time planning the layout of our workstations to make it more user-friendly. We have also prepared some stickers and candies to award the brave kids.
Through setting up computers and network systems, we help create a smart environment to enhance clinical workflow. It's blissful to see how our work indirectly helps the patients.
I feel comfortable in this pretty hospital.
It's convenient that everything is housed in the same building. We can complete registration, consultation, blood-taking, imaging and collect drugs without walking distances. The flow is quick and efficient, all the staff are very nice, and there are books to read. Hong Kong should feel proud to have such a facility.
HKCH is responsible for the laboratory testing for the territory-wide newborn screening for inborn errors of metabolism (IEM), and providing treatment for relevant cases. The Department of Health's Clinical Genetic Service will also move into HKCH in late 2019. These prepare HKCH as a one-stop centre for related uncommon disorders where testing, diagnosis, treatment and counselling could be provided under one roof.
Dr Chloe Mak, Consultant (Pathology) has been involved in the planning of the screening programme since its pilot. She described it as a precious birthday gift for newborn babies, “It's certainly good news if the result comes out fine. Even if it is positive, treatment can begin right away. We only need a few drops of blood for the test but it can change the baby's life.”
Dr Mak recalled that she was upset in the lab after reading the report of a phenylketonuria (PKU) case. “I felt so sorry for the kid. The intellectual development had already been damaged and nothing could be done to reverse it completely.” PKU is now included as one of the 24 IEM in the screening programme. It can be treated with medications and dietary therapy at an early stage to prevent mental retardation. She added, “For the society, these diseases may be uncommon; but for a family, every single child is everything.”
All babies with abnormal screening results would be followed up by the HKCH metabolic medicine team which consists of paediatricians, specialty nurses and dietitians. Said team leader Dr Joannie Hui, “Parents often feel traumatized when they learn that their child have IEM. The stress of taking care of these children is unimaginable. That's why I think they are all super moms and dads. We would try everything to give these patients the best care and they would never walk alone.”
To Dr Hui, the first patient of every uncommon disease is a teacher to the doctors. However, due to small number of cases, it has been difficult for doctors in different hospitals to accumulate experience and learn the latest knowledge. She said, “I have been longing for this hospital for more than twenty years! Gathering these diseases in one place is beneficial to both doctors and patients. HKCH is a dream factory. We have made the first step and there is a long way to go.”
The Clinical Genetic Service of the Department of Health is scheduled to relocate to HKCH in late 2019. Consultant Clinical Geneticist Dr Ivan Lo believes this would facilitate their communication with specialists of the Hospital Authority. Patient referral would be more direct and they could provide inpatient consultation more easily.
While conducting investigation and making diagnosis of genetic diseases are the team's daily routine, the process is by no means straightforward. Dr Lo said, “It's like solving puzzles. How to diagnose a disease that I have never encountered before? This is quite an art.” There are 3,000 to 4,000 known genetic diseases. Different genetic technologies are used to tell what is actually wrong with a patient. For very difficult cases, whole exome/genome sequencing may be required.
Dr Lo has helped many families over the past twenty years. “Although most genetic diseases are incurable, having a definite diagnosis can be a relief to patients who have been seeing different doctors for years to no avail.”
Counselling is another service provided by the team, which involves explaining the mode of inheritance, risk of occurrence and how to prevent passing the disease to the next generation in order to help clients with their family planning. “We have to assess the clients' background, educational level, knowledge of the disease and mental state when offering counselling.”
The HKCH has always been looking for ways to bring child patients a better treatment experience filled with love. To this end, we have partnered with the Hong Kong Disneyland Resort to create a series of new inpatient clothing which combine visual appeal, comfort and functionality. These include regular pyjamas, jackets, and pyjama tops for intravenous therapy. A generous donation of $4.1 million was also received from the Walt Disney Company to support the production cost.
It is hoped that the colourful clothing under this “Dress Well” project would inject doses of happiness and accompany the children throughout their hospital journey.
These unique clothing will be available for child patients when inpatient services commence gradually from this year.
Dr Mickey and Nurse Minnie with Hospital Authority Head Office, Kowloon Central Cluster and HKCH colleagues at the launching ceremony of the Dress Well project.
The Police conducted a 150-people exercise in the hospital premises earlier with an aim to enhance coordination and response during emergency situations. Codenamed “Aim High”, the drill began with a hospital security staff spotting some suspicious persons in the lobby and the Kowloon East Emergency Unit soon arrived at the scene. The criminals then opened fire and seized a hostage. The Police Tactical Unit, Counter Terrorism Response Unit and Police Negotiation Cadre were deployed immediately to lock down the area and evacuate the civilians. The criminals were taken down eventually.
HKCH has obtained provisional accreditation from the Hong Kong College of Paediatricians for five units, namely Cardiology, Nephrology, Haematology / Oncology, PICU and NICU as training units under the General Paediatrics Specialist Training Programme.
Dr Lee Tsz-leung, Hospital Chief Executive, HKCH
Dr Vivian Yuen, Chief of Service (Anaesthesia), HKCH
Dr Eugene Chan, Resident Specialist (Paediatrics), HKCH
Ms Connie Wan, General Manager (Nursing), HKCH
Mr Freddie Poon, Department Manager (Pharmacy), HKCH
Ms Linda Shu, Manager (Corp Comm), HAHO
Ms Miscelle Kwok, General Manager (Administrative Services), HKCH
Ms Vivian To, SEO (External Relations & Donation Management), HKCH
Ms Haze Tung, EOI (External Relations & Donation Management), HKCH
Ms Sarah Lam, EOII (External Relations & Donation Management), HKCH
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