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Newborns & Infants

The first year of life with a new baby is a joyous time. But, for some parents, their world is turned upside down because they hear one word: hemophilia. Some are prepared for the diagnosis because hemophilia runs in the family. But, if it is unexpected, a hemophilia diagnosis in a young baby can be devastating. Know that you have a network of support surrounding you – as you move forward in this exciting, and challenging, time.

Accepting the ‘new normal’

Once you’ve processed the diagnosis, it’s time to move forward. By working with your Hemophilia Treatment Centre (HTC), you and other family members will learn how to provide medical treatment for your child. The best thing you can do at this time is to learn as much as you can about hemophilia. As you gain the knowledge and skills needed to help your baby, you will also gain confidence in managing their condition and its impact on the family. Remember that you and your family will not be alone: you have the support of your HTC team and the many other families in the hemophilia community.

Preparing for developmental milestones

The first thirteen months of any baby's life will be full of ups and downs. Just when you think you know exactly what you are doing as a parent or loving family member, they learn a new trick. Babies are constantly evolving: smiling, cooing, crawling, and walking—it's hard to keep up!

  • By four months they may be starting to rock themselves
  • By six months you might notice they aren't in the same place as you put them because they have started to creep or roll around the floor
  • At eight months they may pull themselves up on furniture
  • When they are around one year old they start walking
  • After turning one year old they will be all over the place!

Just because you or your loved one’s baby has hemophilia, it doesn't mean they won't be as active as other children. At each stage of development, it is very important to monitor them closely and watch out for their safety. There are many helpful safety guides available at your HTC, and a nurse coordinator can provide you with some tips and advice. Try and enjoy these special years in your child’s life. While you need to take certain precautions and think of things other new parents may not have to think about – you can still enjoy watching your child grow, explore and entertain.

Important first steps in caring for a new baby

There are a few key steps you and your family can take to ensure that your first year with your new baby is both fulfilling, and healthy:

  • Ensure you have a good family doctor and access to a HTC. Your family doctor or pediatrician does not have to be an expert on hemophilia, but they will give you all the usual support needed by parents and their children. The HTC staff will work with your family doctor to provide your child with more specialized care.
    TIP: Make sure all family members and other caregivers (like babysitters) have contact information for the baby’s parents, doctor, and HTC.
  • Join the Canadian Hemophilia Society (CHS). This organization will provide any information the family needs, as well as help them contact other families living with hemophilia, who can be of great support.
  • Make sure that you and other caregivers understand the baby's diagnosis—in particular, their factor VIII or factor IX levels because it affects the infant’s specific treatment regimen. Keep a treatment diary that’s accessible to all of your child’s caregivers.
  • Make sure you give yourself breaks. Ask a family member or close friend to babysit so that you and your partner can have time on your own. It’s important that any caregiver (including babysitters) knows the signs of a bleed and informs you immediately. Carry your cell phone at all times, and make sure your caregiver has your number on hand.
  • The child should be immunized against the full range of infectious diseases. These types of injections are generally safe because they are small. But make sure the healthcare professional administering the injection is aware of the child’s hemophilia so they can use the smallest needle possible and maintain pressure on the injection site slightly longer than usual. You can always check with your HTC first if you have any concerns about immunizations. And make sure all caregivers for the child are aware of his or her records and appointments.
  • Involve other family members, including the child’s brothers and sisters, in the baby's care. It’s very important to provide attention to the baby—but not at the expense of siblings, which can cause resentment and teach the affected child to become overly dependent on you.

It's natural to have lots of questions about the care and treatment of your or your loved one’s baby. You’ll find a great deal of useful information on this website, but just remember that for medical advice, always contact your doctor, nurse coordinator, or other HTC staff member.

Finding a Hemophilia Treatment Centre

To find an HTC near you, search the Canadian Hemophilia Society’s online directory at

www.hemophilia.ca / en / treatment-centres
Did you know?

About 30% of people with hemophilia have the disorder because of a spontaneous, non-inherited mutation within their own genes.

Learn more about an unexpected diagnosis

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