Natassia's son, Brooklyn, was diagnosed with CD40 ligand deficiency (X-linked hyper IgM syndrome) when he was ten months old. He had a stem cell transplant five months later.
You can read their story at Brooklyn's stem cell transplant – Immunodeficiency UK
Here, Natassia shares her tips for a hospital stay in the run up to and during recovery from a transplant.
Before the transplant
- Avoid packing things that you are afraid might get ruined. Everything goes in a 60-degree wash and so beloved possessions may shrink.
- For younger children, choose items of clothing that have buttons or poppers. These give easier access to medical lines than garments with zips.
- For yourself, pack clothing that can be layered up, because the temperature can vary on the wards.
- Pack some nice food or treats for yourself, such as hot chocolate sachets, to keep in the room or parent areas.
- Pack something that will keep you occupied, e.g. an e-reader or a tablet pre-loaded with movies.
Recovery
- Personalise your child's BMT room. We decorated Brooklyn's room with lots of photos of family, school friends and home to make it more friendly and cosy.
- Take five minutes a day for yourself. Leave the BMT room to get some fresh air, go for a walk or buy yourself a hot drink. You could coordinate your 'me time' with visits from the play specialists so that your child continues to have company.
- Connect with and talk to other parents on the ward. The chances are they'll know exactly how you feel, and it can be good to chat to someone who's going through the same things.
- Rather than rely on your memory, jot down any questions you have, ready to put them to consultants during their ward rounds.
- Electrical sockets in the BMT room can sometimes be difficult to reach, so pack chargers that have extra-long leads.
Posted January 2026.
