Get Through the First Years of a Hemophilia Diagnosis
Edited by Lor777, Eng
The first year of a baby's life is a time of many "firsts": first smile, first teeth, first steps, first birthday. If this is your first baby, the firsts are even more special. I recommend keeping a journal of all your firsts, because the happiness you feel when your baby starts on the road of development is unique.
When I reread my journal of my son's first year, I see that my ecstasy was as high as my fears were intense. Remember, at that time there were no prophylaxis options. I often felt like I was pioneering new ground--on the moon! I have to laugh when I read some of my entries--I perfected the art of "worrying to no avail." Now I advise parents to keep a sense of humor and cherish these unique and precious times with their baby.
All your baby's firsts may be accompanied by the first signs of hemophilia and, in most cases, the first infusion. You can lessen your anxiety by preparing yourself: Become familiar with normal developmental milestones and learn how your child's normal development leads naturally to normal bleeds. Good preparation can help you avoid unnecessary injuries, speed up the healing process when injuries do occur, and maintain a greater sense of control. The first year is a unique and fleeting time, so don't waste this precious time worrying! Buy a camera or video recorder, keep a journal, and enjoy your beautiful baby.
Out Little "Bruisers"
Pun intended, our children really are "little bruisers." Bruises are probably the most common manifestation of hemophilia in young children, yet they should cause you the least amount of worry. Because bruises are often the first sign of hemophilia, parents can become overly concerned. In truth, bruises in children with hemophilia are a bit more colorful, with some interesting shapes and sizes.
- 1Expect to see bruising.Advertisement
- 2Expect people to look at you oddly.Advertisement
- 3Although bruising is normal with hemophilia, most people are unaccustomed to seeing an infant with black and blue marks.
- 4Bruising is a normal part of your child's development.
- 5Bruising is not caused by holding him wrong or squeezing him to tightly.
- 6Parents report bruises on infants' chests in the shape of four fingertips, from being picked up frequently.
- 7Don't let bruises stop you from being affectionate with your baby.
- 8Always pick up and hold your child, without worrying about bruises.Advertisement
Bruising can make a dramatic debut around 5 months, especially if your child uses a walker. If your child uses a walker, bruises may appear on his rib cage and chest, where he thrusts against the walker. They may also appear on his thighs, where his legs rest on the seat. Although they can be large, in shades of red and black, these bruises are usually harmless. You can tell a bruise is healing by its color and size. A fresh bruise may be dark red, blackish-blue in the center and dark red around the perimeter.
Dark red is a sign of renewed bleeding under the skin. Blackish-blue means that the blood is older and has pooled in one spot. When the bruise begins to heal, it will turn greenish, then yellow. Yellow means that it is almost reabsorbed. Sometimes you may notice a large white bump in the center. This means that the bruising is deep in the skin. Again, don't worry! Call your hemophilia center if you think the white bump and bruise are making your child uncomfortable. The good news is that once you start prophylaxis, you may never see bruises. Also, the tendency to bruise lessens noticeably as a child matures and develops muscles and coordination.
Babies love to teethe and may teeth on sharp items that can cause mouth bleeds. Mouth bleeds are tricky, whether from a small cut on the gums, a nip on the tongue, a tear in the frenulum (that little thing that attaches the upper lip to the gums), or the eruption of new teeth. You can't apply a bandage, you can't apply pressure, and the injury can't dry up, because babies have an infinite capacity to make drool.
Parents groan when mouth bleeds are mentioned, because they are rather messy and take a long time to heal. Instead of dripping infant drool, your child will drip red drool. It's a little more obvious, and you'll go through baby bibs. You may also have to wash out the sheets a little more often; sometimes--only sometimes--new teeth cause the gums to drip a little blood onto your child's crib sheets. After a "Whoa!" (or worse!) from you, use cold water and stain remover to clean up.
A mouth bleed might be your child's first bleed, and your first sight of your child's blood. It may surprise you, especially if you're not prepared. It almost always looks worse that it is. Try to remember that blood mixed with saliva looks like more blood that is really there.
Learning to Walk
Unless he uses a walker, your child will remain fairly immobile until he first attempts to stand, usually after 6 months of age. Bruising may be more apparent now, as your child stands and falls repeatedly. Most of us would probably prefer that our child with hemophilia not walk until he applies for college, so we wouldn't have to worry about head injuries! You can prepare for head bumps (and most are only bumps) in several ways. Head bumps occur while your child learns to walk because he has weak muscles and lacks coordination. When older toddlers fall, they usually brace themselves with their arms to protect their heads from hitting the ground. However, a toddler learning to walk is not coordinated enough to respond quickly. Although he attempts to brace himself, he buckles from lack of muscle strength, and his head hits the ground. When falling backwards, infants lack the neck and stomach strength and coordination to ease their heads down. When your child receives a head bump, there's a good chance he will be fine, especially if he is on prophylaxis. You should still call your hematologist. If your child seems outwardly fine but is not on prophylaxis, your hematologist will usually recommend an infusion as a precaution. React just as you would with any child who bumped his head:
- Try to be calm
- Comfort your child.
- Pack your supplies.
- Drive carefully to the treatment center.
- Everything will be OK!
Other Sources of Bleeds
Did you know that all of us probably have bleeds throughout the day? We bump our knee, bang a shin, or bite our tongue. Most of us never see bruises or bleed into our joints, because our blood clots immediately. In our children with hemophilia, however, small injuries may continue bleeding, and they may experience different types of bleeds. When an unusual bleed occurs, you might wonder why you weren't prepared by your pediatrician or hematologist. There are many possible bleeds, and no one can prepare for them all. Not all bleeds are serious, and not all need treatment. Just as each child is different, each child experiences different bleeds.
Tips Tricks & Warnings
- All of your baby's firsts will probably be accompanied by the first signs of hemophilia, and in most cases, the first infusion.
- Bruises are probably the most common manifestation of hemophilia in young children.
- When your baby is teething, he may put things in his mouth that cause a small cut on the gums, a nip on the tongue, or a tear in the frenulum.
- Mouth bleeds are tricky because the mouth is a moist mobile area.
- Your child may fall many times while learning to walk.
- When in doubt about a bleed, call your hematologist.
Questions and Answers
Hemophilia diagnosis wrong? How can I know for sure?
If you suffer from this diagnosis one way to be sure that you are suffering is through the symptom of over bleeding when you receive a wound. If you cut yourself and apply pressure for 60 seconds, on a person that does not have this issue the bleeding will stop but if it continues this means that you may be suffering from hemophilia.
Categories : Blood Disorder & Issues
Recent edits by: Lor777