We are very happy to meet with you prior to the young person returning to school. We would encourage you to communicate with us at any point with any queries.
Following a transplant
This young person has had a transplant and is now ready to return to school. Most young people are very much better after their transplants than they were beforehand. They can usually can return to full time education and all the benefits this brings.
Children must adjust to living with a transplant, taking lifelong medication and the potential complications which may develop. Heart and lung transplants are not curative and the new organs will only last for a limited period. With careful follow up and adherence to the medical regime prescribed, hopefully most children will have an excellent quality of life.
Returning to school can be daunting. It is rewarding to pick up friendships and education and return to a more normal daily routine. Some aspects of returning to school need exploring to make sure that it is a seamless process and as problem-free as possible.
School attendance and performance
Most children manage to achieve a reasonable level of school attendance. Return to school is deferred until three months after transplant. This is to allow for rehabilitation and reduced infection risk as the dose of immunosuppression is generally lower by this point. This may be longer in some cases following prolonged hospital stay. Some children require a phased return to school depending on how unwell they were and for how long. This can be tailored to the individual child and there are no set rules. This may include starting on reduced hours for reduced days within a week such as 2-3 hours on a Monday, Wednesday, Friday and increasing as tolerated.
There will be essential absences due to hospital appointments and routine blood tests. These tend to decrease in frequency over time. There may be occasions when illness or complications develop. This will necessitate absence from school whilst investigations and treatment are carried out. Some children miss long periods of schooling and worry about keeping pace with their peers and catching up on schoolwork.
It is very helpful in these circumstances if work can be sent in to the hospital and communication maintained with the hospital teaching service. There are some children who struggle with concentration due to their medication and treatment. This may cause them difficulty in school. Occasionally additional support is required in order to help them to achieve their potential.
Accident or illness in school
Most children are remarkably well following transplant but there is always the possibility of the child becoming unwell at school. Minor wounds following an accident should be cleaned and covered to reduce the risk of infection. If the child complains of feeling unwell and the problem does not seem to be passing after a reasonable length of time, the parents should be contacted and advice can always be sought from the Transplant Nurse Specialists.
Any emergency should be dealt with in the usual way by calling an ambulance and seeking medical help. We would not anticipate any emergency due to the child’s heart although rejection of the transplanted heart can occur at any stage post-transplant. The family are usually very aware and quickly recognise any problems and contact us for advice. Complaints of chest pain are unlikely to be due to the heart because the nerve supply has been severed during surgery.
Medicines
After transplantation all children are on medication, mostly this is taken outside of school hours to minimise disruption. There may be times when it cannot be avoided however and it is helpful to plan how this can be managed in school.
Infections
Infection is always a worry for parents of children returning to school. The medicines required after a transplant make the immune system less efficient and less able to fight infections. This tends to be a bigger problem for children who have their transplants when they are less than five years old.
It is very helpful for the school to let the transplant child’s family know when there are any outbreaks of illness within the school, such as diarrhoea and vomiting. It is not necessary for the transplant child to stay off school during these outbreaks.
Some infections such as measles and chickenpox can be dangerous for people who have had transplants and are not immune to them. In the event of an outbreak of chickenpox or measles or other unusual infections, please let the family know:
- When the contact occurred
- How close the contact was and when the illness was diagnosed.
No specific action is needed for scarlet fever, parvovirus or hand, foot and mouth. You will just need to make the child’s family aware of it. Other common viral infections can include warts and Molluscum contagiosum which give unsightly skin lesions which are difficult to eradicate.
Hygiene
No additional specific hygiene measures are necessary other than encouraging hand washing, speedy disposal of tissues and social cleanliness. This is more important than ever since the coronavirus pandemic. Some of our patients have increased anxiety due to this. Opportunities for hand sanitising and to be able to clean desks or workstations would be appreciated.
Physical activity
Children who have been unwell for long periods before their transplant may take some time to redevelop their muscle strength and stamina.
Some children initially struggle with stairs and carrying school books and equipment around. This is especially if the school is spread over a large site. Such children may need concessions such as using the lift if available, access to a locker or to leave class a few minutes before the majority of the children.
Physical education is essential and there is usually no reason why children should not participate in a wide range of activities including swimming. A warm up period before exercise and cool down period after are recommended. This will allow the heart to speed up and slow down under the control of chemicals in the blood stream instead of nerves, as these have been severed during the surgical operation.
Children with pacemakers must avoid activities where they may receive a blow to the chest as this may dislodge or fracture the pacing wire.
Diet
There are no dietary restrictions for most children other than minimising risk of infection through avoiding raw eggs or meat. Grapefruit must be avoided either in fruit or juice form. This is because it interferes with the absorption of essential medicines. A well-balanced diet should be encouraged.
Skin protection
Skin protection with high factor sun block is important as immunosuppressive medication predisposes to cancers including skin cancer. We generally recommend that parents apply sun cream to their child before school or ensure there is access to some at school. Covering up in the sun is also recommended during outdoor activities.
Being different
Many children who have undergone transplants have a sense of being different from their peers which can be quite distressing. Appearance is an important issue and some children have cosmetic side effects from their medication or surgical scars which they are very conscious of. These may include excessive hair growth, swollen gums, stretch marks, weight gain and moon face from certain medications.
It is the child’s decision as to how much information they share with their peer group about their health. Some children prefer to tell only their closest friends whilst others are very open about it.
Although fitting in to a peer group is important, if it leads to risk taking behaviour such as not taking medication properly, smoking, drugs or unprotected sex. This can have very serious consequences for the transplant child. Bullying can also be an issue for some children whereas others can be quite protected by their friends.
Many children who have undergone transplantation require the support of a psychologist to help them come to terms with their experiences.
School trips and animals
Participation in school trips should be encouraged to facilitate normality and social development.
Residential trips may require a little planning to ensure a care plan is in place. This is to make the child receives medication correctly, appropriate action is taken if the child becomes unwell and insurance is in place to provide suitable medical care abroad.
Children are not discouraged from being involved in caring for pets or visiting farms. Pets should be fully vaccinated and sensible precautions such as good hand hygiene and use of gloves if appropriate should be employed.
Children should not be involved in the clearing of waste such as litter trays, mucking out horses or handling of faeces. We also discourage handling of reptiles and birds due to infection risk.
For further information
We hope that this information can act as a reference but it is by no means a replacement for talking to the Transplant Team. Please do not hesitate to get in touch with any queries.
Contact
Office hours
Monday to Friday, 9am to 5pm.
Outside of these times please ring ward 23 on 0191 213 7023 if you have an urgent query affecting your child’s transplant health
