Friday, February 22, 2013

How to talk to your older child about your younger child with hemophilia

Yesterday, I wrote a post about what I wish I would've said to our oldest child when our 3rd was diagnosed with hemophilia.  It was a very personal post from my heart, and I hope it might help another new parent who may not know what to say.  Today's post is straight to you, Mom or Dad.  I wanted to directly share what I've learned about talking to children about hemophilia.  I hope this helps you the way I needed to be helped back then.

Here are 5 keys to having a successful talk with your child about hemophilia:

1. Explain the facts in simple terms.
2. Build their confidence as a great big brother/sister.
3. Verbally accept responsibility as mom/dad to handle whatever hemophilia dishes out.
4. Give them age appropriate jobs pertaining to protecting and taking care of their baby brother/sister.
5. End the conversation in a way that empowers and encourages your child.  Hemophilia will be a big part of his/her life too, and he/she needs you to believe in their ability to handle his/her role.

Be careful.  When you are new to hemophilia (when you are new to anything, really) it can be so scary.  You may unintentionally put way too much pressure on your older child because you are so afraid of your younger child getting hurt.  When the baby gets hurt, take a minute to breathe.  Calm down.  It will be okay.  When you are ready, calmly and respectfully ask the older child what happened.  Do not speak down to them or yell at them.  They need to be able to trust you to tell you what happened without fear.  Treat your older child as an important part of the team.
Things to NEVER say to your child:

1. Yell or scream about anything.  It never ever helps!
2. "What were you thinking?  You could have given him a bleed!  Do you want him to have to go to the hospital and have to get his medicine for a bleed?!"
3. "Don't hit his head!  He could get a bleed in his brain and even die!"

The idea is to empower your child, not heap shame on your child.  He/she will carry that shame for years and even life if they don't heal from it.  Shame will not help them be a better sibling or a better person.  Don't put the heavy burden of bleeds/death on his/her little shoulders.  Your child needs to learn how to be kind and treat others with respect, hemophiliac or not.  You should teach your children about what a bleed is and what factor does, but hurling the threat of a bleed at your little one in the heat of a crisis will only make things worse.

Great things to say to your child:

1. "Please tell me what happened."; "Thank you so much for telling me."
2. "Remember to be very careful with his/her joints."
3. "Be extra careful with his/her head."
4. "I know you didn't want to hurt your little brother/sister." -or- "I know you are sorry for what happened." -or- "You know not to treat people like that.  Please go make things right with your brother/sister right away."
5. "It's going to be okay."
6. "I love you."

Mom or Dad, this is an intimidating and sometimes difficult journey, but you will learn quickly.  Things get so much easier when you start treating your child at home.  When you are empowered, your children get empowered.  Love your children.  Teach them what is right.  You can do this and you are ALL on your way to becoming experts.  It's going to be okay.


  1. Excellent! I love the attitude of having the power to do what must be done. We all can feel helpless, but obviously you & your family has shown it can be done. You have proved that! Great job!! Thanks again for the information. Love you all, Mom

  2. this is wonderful !! should be a leaflet for new parents!!


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