(Ages 0 to 12 months)1
As the parent of a newborn with hemophilia, you may be experiencing a mix of emotions. It may have been a shock to hear this diagnosis. Here you will find suggestions for ways to safely manage your child’s bleeding disorder and precautions you should take during his or her first year of life. It is important to build a relationship with your child’s pediatrician, hematologist and specialty pharmacy in order to develop a care plan that is best for your child.
How will I know if my child has a bleed
In young children who cannot yet talk, it’s important to be aware of any signs of bleeding. For infants, you might notice your child:
- shows signs of a headache through prolonged fussiness that cannot be lessened by a diaper change or by feeding/burping
- seems more sleepy than usual
- shows signs of a neck ache
- has nausea and/or vomits
- seems sensitive to light
- is very fussy and hard to console
- loses consciousness
Teething can cause some discomfort and gums may appear swollen or discolored. Do not apply over-the-counter medications to the baby’s gums without first discussing this with your pediatrician and hematologist. If bleeding occurs, speak with your hematologist. A damp, soft baby washcloth kept in a clean plastic bag in the refrigerator or freezer can be helpful. Always remove the clean cold baby washcloth from the plastic bag before gently applying it to the gums. Do not rub the gums if there is bleeding or a clot. To avoid the possibility of choking, never leave the baby alone with the washcloth.
If you suspect a bleed, communication with your child’s hematologist is crucial. You may need to administer an infusion if you’ve been trained on how to do so. Or, you may need a bleeding disorder-trained nurse from your specialty pharmacy to visit your home for the infusion.
How can I help my child avoid or manage pain
Take steps to help your child avoid bumps or falls, and use protective padding when appropriate or advised.
Treat as instructed by your child’s hematologist at the first sign of a bleed to minimize pain.
- Use a topical anesthetic cream before needle sticks, if advised by your hematologist, to avoid pain associated with the infusion process.
- Discuss treatment options with your hematologist to minimize risks of bleeding episodes while allowing your child to remain active.
- Only give your child pain medication that has been prescribed or recommended by a healthcare professional who is familiar with the child’s bleeding disorder.
- Remember: Do not give any medication that contains aspirin or an NSAID (a nonsteroidal anti-inflammatory drug). These drugs can prolong bleeding. Read the label on any medication you use to see what’s in it. Also, check with your pharmacist when a medication is prescribed. Aspirin also can be listed as ASA (acetylsalicylic acid).2
A baby’s first year of life is an amazing time. It will seem as if your baby makes a new discovery every day. As a parent or caregiver, you will also be making new discoveries and learning about hemophilia. As your child grows, utilize additional valuable life stages sections here.
For additional information about hemophilia and your newborn’s development, pain management and safety, download:
- 1Johnson M, Gorlin JB. "Child development with a bleeding disorder and transition." Nurses' Guide to Bleeding Disorders. National Hemophilia Foundation. 2013.
- 2Medical and Scientific Advisory Council of National Hemophilia Foundation. Recommendation #175: "Guidelines for emergency department management of individuals with hemophilia". October 2006. hemophilia.org/sites/default/files/document/files/175.pdf. Accessed Aug. 9, 2017.