Newborns & Infants
The first year of life with a new baby is a wonderful time in a family's life. However for some, it also comes with a diagnosis of illness. If your or a loved one's baby is diagnosed with hemophilia at birth or later in infancy it may leave parents and other family members feeling overwhelmed and worried about the child's future health. Some parents may be prepared for the diagnosis because hemophilia runs in the family but for others, approximately 30%, the diagnosis comes with disbelief and many concerns because there was no known history of hemophilia in the family.
Welcoming a New Baby, Accepting New Challenges
A baby with hemophilia will bring both joy and challenges. Through a Hemophilia Treatment Centre (HTC), you and other family members will learn how to provide medical treatment for the child. Remember that you and your family will not be alone: you have the support of many in the hemophilia community. The best thing you can do for the baby and your family is to learn as much as you can about hemophilia. As you gain knowledge and the skills needed to help the child, you will also gain the confidence and support to manage the impact on your family. There is a caring community of medical professionals and other families like yours to help you through every stage of the child's development.
Being Prepared 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 your or your loved one's baby has hemophilia doesn't mean he or she 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 Hemophilia Treatment Centre, and a nurse coordinator can provide you with some tips and advice. The best thing you can do for yourself, your family, and most of all the new baby, is to have fun and enjoy this age—because before you know it, they will be packing up for college!
Important First Steps in Caring for a New Baby
Whether the family knows from the start that a newborn has hemophilia, or the child is diagnosed later in infancy, you and your loved ones will have many questions and concerns. Following are a few key steps you and your family can take to ensure that your first year with your new baby is as enjoyable as it should be:
- First and foremost is the need to have a good family doctor and access to a Hemophilia Treatment Centre (HTC). Your family doctor or baby's pediatrician does not have to be an expert on the condition but they will give you all the usual support needed by couples and their children. The HTC staff will work with your family doctor to provide the child with any specialized care that may be needed.
TIP: Make sure all family members and other caregivers (like babysitters) have contact information for the baby's parents, doctor, and HTC. - The baby's parents and immediate family should also join the Canadian Hemophilia Society. This organization will provide any information the family needs need, as well as help them contact other families living with hemophilia, who can be of great support.
- Make sure that you and other family members and caregivers understand the baby's diagnosis—in particular, it's important to know their factor VIII levels because it affects the infant's specific treatment regimen. It is also important to keep a treatment diary that's accessible to all the child's caregivers.
- All parents need to have some time alone, and the parents of a child with hemophilia are no exception. If you're another family member, offering to babysit can be a great relief to parents. Babysitters can be taught to monitor a child for any signs of a bleed and inform parents immediately. If you're a parent or the child's primary caregiver, always carry a cellular phone, and be sure to leave all emergency numbers and any other number where you can be reached.
- The child should be immunized against the full range of infectious diseases. Immunization 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 Hemophilia Treatment Centre staff member.