Parents
What to expect when you are expecting…
If you/your partner have a bleeding/clotting disorder there is a chance that this could be passed on to your baby as well as affect how the pregnancy is monitored.
Your Haematologist will want to know as soon as possible of pregnancy so that the appropriate checks for mother and baby are performed. You/your partner will have regular combined reviews with an obstetrician and a haematologist to keep track of blood levels during each trimester.
In some cases it may be suggested by the Haematologist to find out the sex of your baby, called foetal sexing testing, before birth to predict any potential diagnoses (there is also the option to have pre-natal diagnosis). The mother may also be asked to consider a C-Section to ensure a quick and safe delivery.
Delivery Day…
If you/your partner has decided to have a C-Section then your Haematologist and Obstetrician/Midwife will work together and discuss a plan with you for delivery day and how the procedure will occur.
A plan will also be put in place for a spontaneous delivery and if a C-section is no longer feasible.
Once your baby is born they will be assessed by the midwife whilst also having the imbecile cord pricked (this gives your babies blood levels) immediately after birth.
A Paediatric Haematologist will discuss the results with you.
Clinic Follow ups…
The mother will be given the usual follow ups by the post-natal team to ensure they are recovering well after birth as well as being given a review date with our Haematologist to go over any post-natal bleeding issues and advice.
Your baby will be given a review with the Paediatrics Haematologist who may do further blood tests and begin to discuss a diagnosis. They will offer support and guidance for future immunisations and what to look for if there are bleeding issues after bumps and falls. Your baby will then be seen once every 6 months thereafter.
Nursery & School…
Choosing a nursery or school for a child with a bleeding/clotting disorder is no different to any other child. The Centre Paediatric nurse can do Nursery and School visits to educate pupils, staff, teachers and parents about your childs diagnosis. The education will contain information on what their diagnosis is, how to look out for symptoms and what to do in the case of an injury/accident. We will also provide all the information in writing along with leaflets and books.
Helpful Links for Parents …
- https://www.children1st.org.uk/help-for-families/parentline-scotland/
- https://contact.org.uk/conditions/haemophilia-von-willebrand-disease-and-other-coagulation-defects/
- https://opfs.org.uk/support-and-advice/health-and-wellbeing/taking-care-of-yourself/
- https://www.mygov.scot/child-disability-payment
- https://haemophilia.org.uk/support/day-day-living/bleeding-disorders-and-school/for-parents/tips-to-help-your-child-settle-into-school-nursery/
Carers
We like to work closely with carers and develop a working relationship to ensure that both patient and carer are healthy not only physically but mentally.
| Edinburgh Carers Council ECC provide independent individual and collective advocacy for carers supporting someone with mental health difficulties, a learning disability, dementia, physical disability and/or acquired brain injury | |
| VOCAL – Voices of Carers Across Lothian For individuals looking for information and support to carers in Edinburgh and Midlothian, in addition to training and leisure events | |
