On arrival at the Unit, the child is allocated to a BUBBLE sterile unit and parents and family members are given instruction on the strict hygiene protocol. Importantly, family members are asked not to kiss or have any facial contact with their children as a lot of bacteria are carried in the mouth and nose. Medical and nursing staff provide as much information and support at every stage.
The child is assessed by a doctor and a nurse. A lot of questions are asked of the child’s family. Swabs, blood and specimens will be taken from the child for tests to confirm diagnoses. The immediate priorities are to establish:
- is there an immune deficiency? If yes, what exactly is it?
- what infections does the child have?
- how are we going to treat it?
Once the appropriate information is gathered, the medical team discusses with the parents their child’s condition, possible treatment and chance of survival.
The child needs a Central Venous Catheter, known as the Central Line, which, under general anaesthetic, is inserted into a large vein in the chest. This enables the medical staff to obtain numerous blood samples and administer medications, nutritional fluid, blood products and bone marrow. Importantly it allows us to do all this without causing pain or distress to the child.
Once it has been established that a bone marrow transplant is required, a donor must be identified. The options include:
- Identical sibling match
- Mother or father
- Other family member
- Matched unrelated donor from a volunteer register
- Umbilical Cord blood
- Mismatched haploidentical (half) parent
The bone marrow volunteer register includes:
- Anthony Nolan Register
- British Bone Marrow Register
- Welsh Panel
- International search
In some cases, it is necessary to undergo chemotherapy to destroy the mother’s cells before the bone marrow transplant can be carried out. Once the transplant is completed, each child is closely monitored to ensure that the new immune system is developing and to respond to the numerous complications that arise.
