Tracheal service frequently asked questions
Your frequently asked questions answered by the Tracheal service at Great Ormond Street Hospital (GOSH).
- What do I do if problems occur out of hours?
- Does my child need vaccinations?
- Does my child need to take lifelong medicines?
- My child has swallowing difficulties and my local services raised concerns about using naso-gastric (NG) tubes. What should I do?
- Why is there so little published about my child's condition?
- How can we meet/speak to other tracheal patients/families?
- Can my child attend play groups, nursery or school?
- How soon after their operation can we go on holiday?
- Can my child exercise/play sports?
- What are the chances that my next child will have a tracheal problem?
Please present to your local hospital for any urgent medical care. There is no Accident and Emergency (A&E) department at GOSH. On weekdays, your local team will be able to contact the Tracheal team for advice. Out of hours, they will be able to contact the Cardiothoracic Registrar on call to discuss any concerns.
We strongly recommend that your child receives the annual flu vaccine in addition to the recommended vaccination schedule. As regards RSV prophylaxis, we will recommend this on a case by case basis.
Usually a tracheal condition does not warrant a treatment with continuous medication. On a case to case basis, we review the need for prophylactic antibiotics and/or the need for antibiotics to treat acute respiratory tract infections. As your child grows up, their 'medication regime' should not be any different from their siblings.
My child has swallowing difficulties and my local services raised concerns about using naso-gastric (NG) tubes. What should I do?
Please call the Tracheal Clinical Nurse Specialist (CNS) on 020 7813 8348 initially. We will then be able to communicate with your local services. Furthermore we can make a referral to the Speech and Language team or a dietitian.
Severe tracheal disease in children is rare and only recently have advances in surgical and medical management enabled us to now treat these conditions successfully. The Tracheal team at GOSH has published multiple articles in the last decade and we are now in a position where we are able to present and discuss evidence-based recommendations. Parents of other children with severe tracheal disease are also a good source of information.
Most of our families participate on the congenital tracheal stenosis Facebook group to share their experiences. However if you do not wish to participate with this group, the Tracheal CNS can help set up contact/meeting.
There is no reason why your child shouldn’t attend any social activities. Children can pick up common childhood infections anywhere they go and keeping them isolated won’t reduce the incidence of infection. We usually recommend that you wait until they are settled at home and we have switched your child from acute to routine follow-up before you send your child to nursery or school.
In theory, you can go on holiday as soon as you like. However severe tracheal disease is rare and only a few specialised centres in Europe and the USA are equipped to treat tracheal patients. Usually, families prefer to wait for their child to be switched to routine follow up and arrange appropriate insurance before travel.
From our experience, most families feel confident travelling abroad around a year after their child's initial operation. We are always happy to discuss any travel plans with you and help suggest a tailor-made solution.
We have recently done a first assessment of quality of life in children with severe tracheal disease. Children and parent-proxy reports are very encouraging and the scores are almost identical to healthy children’s scores. We are hoping to publish this data soon. Also, from our experience, most tracheal patients are as active as their peers or siblings by the time they start school.
To this date, there is no evidence that severe tracheal disease is linked to any specific genetic make up. We are currently performing further research in this area and might approach you to participate - your help would be appreciated. In our practice, we have never seen siblings with the same tracheal disease except in identical twins.