GOSH Telehealth service brings new hope for Chinese patient with rare tumour
Hua’s harrowing journey over 28 surgeries
In 2016, when Hua was only a year old, her parents noticed that she had a hoarse voice for no reason. After a laryngoscopy examination at a children’s hospital in Beijing, Hua was diagnosed with juvenile onset laryngeal papilloma (JLP).
The discovery of Hua’s diagnosis made her parents very distressed. According to their local doctor, although the disease presents as a benign tumour, if the disease becomes severe, it can cause airway obstruction and difficulty in breathing. This disease is not only very dangerous, but children with the condition are also prone to relapse. To treat it children often need multiple surgeries.
Although Hua’s parents felt very upset because of their daughter’s suffering, in order to treat the disease, they had to send their child to a top local hospital for carbon dioxide laser resection, a form of laser surgery. After the surgery, Hua’s hoarseness symptoms became better. Unfortunately, after five months, the symptoms appeared again and the tumour relapsed.
Hua started the treatment again. Under their friends’ recommendation, her parents transferred Hua to a new hospital in Beijing and where doctors used a new treatment method; Photodynamic Therapy (PDT), a treatment that involves light-sensitive medicine and a light source to destroy abnormal cells. The hospital advised her parents that after six courses the tumour would be cured. The plan was to come to the hospital every 20-30 days for a one-time PDT treatment. Unfortunately, after six sessions of PDTs, Hua’s symptoms became more severe. She even developed some new symptoms including difficulty in breathing, vocal cord adhesion, scarring and laryngostenosis (narrowing of the larynx).
The parents had no choice but to refer Hua back to their previous local hospital. Due to laryngostenosis, Hua had to have a surgery every month. Until late November 2019, this little girl had Laryngoscopy resection surgery 28 times in total.
Second opinion via telehealth service makes real difference
Too much surgery can be painful for children and heart-breaking for parents. Therefore Hua’s parents decided to seek expert advice from international doctors via remote consultations. With help from Saint Lucia Consulting, a professional overseas medical service organisation, Hua’s family successfully booked a “face to face” video consultation with Dr Richard Hewitt in the Ear, Nose and Throat (ENT) department at Great Ormond Street Hospital for Children (GOSH) and got Dr Hewitt’s expert opinions efficiently.
Dr Richard Hewitt is a Paediatric Otolaryngologist (Ear Nose and Throat, ENT), Head & Neck and Tracheal Consultant. He is the Director of the National Service for Severe Tracheal Disease and The GOSH "Tracheal Team" and the Co-Director of the GOSH& University College Hospital Foetal Airway Service. He has a specialist interest in all aspects of Paediatric ENT, Tracheal and Complex airway surgery.
“For the children with recurrent respiratory papillomatosis, we usually use ‘cold techniques’ especially microinvasive debridement and try to avoid using ‘hot techniques’ which includes the carbon dioxide laser resection Hua took before,” Dr Richard Hewitt said. “‘Hot techniques’ like carbon dioxide laser resection may lead to uncontrolled heat damage and laryngeal stenosis”.
Moreover, Dr Richard Hewitt explained that due to the pathophysiological characteristics of recurrent respiratory papillomatosis in children, there is no cure for the disease through surgery. Treatment should be maintained throughout childhood, while waiting for the child's immune system to continue to develop which will assist in eliminating the disease. In previous GOSH cases, the average duration from the initial intervention through the treatment course and then finally the cure was two and half years.
Alongside effective interventions, the intervals between treatments can be slowly lengthened. However, for children who suffer from the severe form of the condition, which may even recur every week, Dr Richard Hewitt explained that adjuvant medication such as Cidofovir would be an option. However, based on Hua’s specific situation, Dr Hewitt suggested the cold technique could be used to treat the current problem of recurrent stenosis and extend the interval of treatments to improve the condition of Hua, while causing less harm.
In terms of Hua’s current problem of airway stenosis, Dr Richard Hewitt recommended that no graft should be used for treatment. In regards for papilloma, immunosuppression by graft therapy may lead to a higher risk of tumour invasiveness.
Dr Richard Hewitt also explained that he had treated 34 children with this disease who received carbon dioxide laser resection before seeing him. 33 of them do not need any open surgery or Cidofovir drug therapy and only repetitive interventions were needed. After Hua has recovered from the tumour, an open airway reconstruction will be required.
Hua’s parents were very happy about the remote video consultation with Dr Richard Hewitt. They found having a second opinion very useful and it brought them new hope. For patients suffering from rare and difficult-to-treat conditions like Hua, the formulation of a treatment plan requires accurate judgment and authoritative treatment plan due to more complex pathological symptoms.
After the remote consultation, staff from Saint Lucia Consulting commented: “telehealth service is ‘a good medicine’ for treating difficult and severe diseases in the Internet era. Nowadays, with the help of the convenient internet, everyone can stay at home like Hua’s family, and directly communicate with experts in world-renowned hospitals to get their authoritative second medical opinions”.