Get Through Your Child's First Hemophilia Infusion

The first infusion is a milestone for parents. It really confirms to you that your child has hemophilia. It's memorable, too, because of the strong emotions that accompany it: You've worried about the injury itself, and your daily routine has been inconveniently interrupted by a trip to the hemophilia treatment clinic or the emergency room. Above all, you know he is going to be stuck with that fill-in-the-blank needle! It's not a happy prospect. Infusions are not normally difficult, but in the first year they rarely go smoothly. Why? It's hard to find a vein in an infant, even for the most experienced medical staff. Your doctor will need to locate a good vein to access, which usually means there will be several needle-sticks.

I've heard many mothers say that the first few infusions were harder for them than for their babies! I was one of them--ordered out of the room by my nurse for being more upset than my baby. My perception of the situation was worse than the situation itself. I was making everyone upset. It's difficult to stay calm and be helpful when your baby screams and you cannot relieve his fear or pain, at least until a vein is found and the medicine flows into him. Forgetting that babies are pros at screaming, parents may find themselves feeling guilty for allowing the injury to happen, especially if it seemed preventable. Along with feeling angry at yourself, you may lash out at those around you--The ER staff who make you wait, the doctors who don't seem to understand, or your spouse.

At first you feel pretty helpless--perhaps the way men feel witnessing childbirth. Although you both went to childbirth classes, prepared yourselves mentally, packed your little bags, and awaited the day, actually being in labor is another story. Moms may have thought, "Nobody ever told us it was going to hurt this much!" and then promptly forgot the breathing exercises and stopped focusing on the flower. Instead, they yelled at their husbands and the doctors!

It's pretty much the same with your first infusion. Although you have prepared for this day, actually being there, with your child crying seems to wipe out all knowledge, rational thinking, and capacity for politeness. You only want the hurting and the needle-sticks to stop. Things seem better the moment the doctor finds the vein and the needle slips in. Everyone sighs with relief. (Except your child, of course, who swears vengeance by continuing to cry). You feel a sense of control returning. Minutes later it's over, and you're able to hold and comfort your child--just like childbirth!

• You'll probably have to go to your treatment center or ER for the first infusion or until you learn how to infuse at home.
• You may have several trips to the ER for the first year, which doesn't make life any easier.
• You will have to adjust to rigid hospital procedures.
• You will not know how serious your child's injury is or what bleeding will do to them.
• Your infant can't tell you that his knee tingles or he has a headache.
• He can't tell the doctor, either, who may order tests.
• All the guessing and testing can challenge your limits!

How to Prepare for the First Infusion

1. 1
   Keep your spirits high while preparing yourself for unexpected.

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2. 2
   Avoid going to the ER alone unless you are supermom or super dad.

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3. 3
   Take a companion for support to the hemophilia treatment center, even though it's a much nicer place.

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4. 4
   It is difficult to maintain control when you're alone and overwhelmed by feelings.

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5. 5
   Bring a family member or friend, preferably someone with a good sense of humor, so you will not feel guilty if you have to leave the treatment room for a few moments to regain your composure.

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6. 6
   Your primary job is to comfort your baby.

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7. 7
   Doctors or nurses can examine him, but no one can comfort him as you can.

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8. 8
   An infant or young toddler cannot master his fears alone.

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9. 9
   When you are present, he leaves his emotions in your hands.

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10. 10
    If a doctor insists that you leave a room, just say, no, but stay calm.

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11. 11
    Put this experience in perspective.

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12. 12
    Kids cry when they are forced to do something they don't want to do.

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13. 13
    Eventually your child will not cry when he's infused.

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14. 14
    Try applying a topical numbing cream to the infusion site

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15. 15
    A little cream on the needle site means no pain to your child when he is infused.

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16. 16
    Ask your pediatrician or hematologist for a prescription for EMLA.

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Remember, remind yourself, too, that no one knows yet which vein is good for your child. The nurses or doctors may need to test different sites. Try to be patient. Remember to speak out if you see staff going for veins in dangerous locations, such as the wrist or the neck, where infusions might actually start a bleed or damage nerves.

If your child has mild factor VIII deficiency, he might be able to avoid and infusion for some bleeds if your hematologist recommends desmopressin acetate, more commonly known as DDAVP. DDAVP is a synthetic (man-made) hormone that naturally elevates the factor VIII levels stored in the body. The increased factor VIII levels are sometimes enough to stop certain bleeds.

DDAVP can be infused or inhaled nasally through the brand name product Stimate. Its great advantage is that it carries no risk of viral transmission because it is man-made. Its disadvantage is that it depletes stored reserves of factor VIII, which take 24 to 48 hours to replenish. A bleed requiring treatment for several days may not respond well to DDAVP after the initial infusion because the reserves of factor VIII are used. The effectiveness of DDAVP also varies greatly from patient to patient. If your child is classified as mild or moderate factor VIII deficient, ask you hematologist about DDAVP; you just might be able to avoid an infusion by using a nasal spray.

Let's be honest: This can be a rough time. You're facing something new, something frustrating, something you haven't mastered yet. It's hard to watch your infant endure infusions and first bleeds. It's hard to accept that hemophilia is here to stay. This is a good time to reach out to other parents for support and reach out to your medical staff for advice and reassurance. Most parents and medical professionals will tell you that things do get better. You need to remind yourself that doctors are doing the best they can and that treatments will make your baby well quickly. Life will get better. Down the road, you will face different issues and different bleeds, but you'll have better control over hemophilia. Have confidence that you will soon master hemophilia.

The first year is an important one for you and your child. Your anxiety is accompanied by lots of learning, little sleep, and by tons of joy. Try to enjoy your child's first year. It is a special time for learning, growing, and loving. One parent I know recalled sadly that she was so worried and depressed about hemophilia in her child's first year that she didn't enjoy anything. And not enjoying can be self-imposed--so much depends on your focus. The first year goes by quickly, and the joy and good times will outnumber the bad by a wide margin. And you will get to sleep again! Except for those few trips to the hospital, enjoy every minute of your baby's first year!

• Create a safe environment.
• Make sure your child is wearing Medic Alert bracelet.
• Your child may have his first infusion during the first year.
• Reduce stress by taking someone along with you to the hospital.
• Participate in the infusion by comforting your child.
• Stay calm.
• Use EMLA, a topical numbing cream for the infusion site.
• The first year is an important one for you and your child, enjoy it!

If you have problems with any of the steps in this article, please ask a question for more help, or post in the comments section below.

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