Our advice

"If you have any concerns please contact us, even if you think the query is insignificant, that is what we are here for."

 Niamh MacIndoe, Nurse Specialist

Caring for your baby

Having a baby is a life changing experience for all parents. It is often a time of great excitement but can also be a time of stress and worry, even more so if your child has been been diagnosed with a bleeding disorder.

If your baby has been diagnosed with a bleeding disorder it can be a shock if there has been no previous family history. It is important for you to get lots of support in helping you come to terms with the new diagnosis and helping you look forward to parenting a healthy child who happens to have an inherited bleeding disorder (IBD). Even when there is a family history of an IBD perhaps including prenatal diagnosis there can be a period of mixed emotions for parents and family. We encourage you to talk to whoever you feel can help you most through this but haemophilia centre staff will be there to try and help with this process.

Often a primary concern for new parents is understanding what is a ‘bleed’ and how to recognise bleeds. The haemophilia staff will explain in detail more about your child’s particular bleeding disorder, which will include explaining what type and severity of bleeding your child may present with.

In severe haemophilia and moderate bleeding disorders in particular we will encourage you to check for signs of unusual bruising or bleeding. This can be as part of your baby’s daily routine, but also being vigilant as to the possibility of a ‘bleed’ when your baby is unusually distressed. For example bath time can be a good opportunity to look out for signs of bruising or swelling. Make sure that you:
  • Check for bruises or swelling
  • Compare the size and shape of your baby’s arms and legs to ensure they are similar
  • Confirm they are able to move their limbs easily
  • Check for mouth bleeds

As your baby grows and becomes more mobile, if he or she has a bump or fall, check for signs of a bleed and call your haemophilia centre. They will advise you on what to do, as you may need to visit the hospital so that they can carry out an assessment.

It is essential for a baby’s development that haemophilia or other bleeding disorders do not dominate as they are normal, healthy babies in every other way, so this should be the most important thing to parents and the rest of the family. Cuddle, play with, and enjoy your baby as you would a child without a bleeding disorder. By only focusing on the bleeding disorder, you risk missing out on all the other wonderful stages of their development such as the first smile, rolling over and walking.

If your baby has severe haemophilia, regular treatment does not usually begin until they become mobile and more active, but you might want to discuss the treatment options available with your healthcare team.

Like for all babies childhood immunisations are very important and administration of vaccinations can be talked through with the haemophilia centre as well as your GP/health visitor/practice nurse. You can access the recommended schedule for vaccinations in the UK here.

Remember that you have a network of support from your family, friends and the haemophilia centre, so whenever you need help or advice, you can contact them at any time. You might also want to ‘buddy up’ with another parent or attend patient groups in order to talk to people who have been through or are going through the same stages with their child, which you can discuss with your haemophilia centre.

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