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.

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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.

What I wish I had known to say to our oldest child without hemophilia when our 3rd was diagnosed:

Eli and Isaiah around the time Eli was diagnosed
 with severe hemophilia (Spring 2008)

"Hey, buddy.  I want to talk to you about your baby brother.  Daddy and I just found out that he has something called hemophilia.  I don't know a lot about hemophilia yet, but I am going to read some books and talk to some people who do know a lot about it so I can learn.  You will learn a lot about it too.

"Sometimes, hemophilia might seem a little scary.  See, when Eli gets a boo boo or bumps his head too hard, we might have to take him in to the hospital so they can give him his medicine.  He may even get hurt when you two are just playing.

I want you to know that that's just how hemophilia is and you don't need to worry.

"Treat him the way you know you should treat anyone.  Remember:
-No hitting with your hands or anything in your hands.
-No kicking.
-No throwing toys at anyone unless you are playing catch with something soft.

"As Eli grows up, you will be silly boys together, have pretend sword fights, run, and play super heroes.  Don't let his hemophilia scare you.  Mommy and Daddy will take good care of you all.  Eli is so blessed to have you as his big brother.  You are already teaching him so many wonderful things!

"I have one new job for you, okay?  If Eli gets hurt and you see what happened, it is really important that you tell Mommy or Daddy or another grown-up exactly what happened.  You need to be really brave and tell us even if YOU hurt him.  Don't worry about getting in trouble.  We will be very thankful to you for telling us the truth.  Then, you can help take care of him.

Eli and Isaiah August 2012

"Here's some great things you can do to help:
-Go get an ice pack from the freezer.
-Put on one of his favorite shows to cheer him up.
-Get him his favorite toy or blanket.

"I know this is a lot to understand right now.  You can always ask me or Daddy anything you want to know.  If you ever feel sad or angry, you can always tell us and we will listen.  You are a very special little boy, and I am so glad Eli has you."

A Special Prophy for Nursing Class

Eli's reward for being so brave

Today, Eli let Matt give him prophy in front of his nursing class (37 students + 1 teacher).  When Matt first asked him if he'd like to do that, Eli was very excited!  He was excited this morning before we went.  Then, when we got there, we discovered that we forgot the numbing cream.  We finally got him to agree to do it for a special surprise afterwards.  Then he saw how many people were in the class and hid in the next room while Matt was setting up.  He didn't realize there would be so many people watching. He got pretty uneasy, and wanted to go home.  He hid behind me when we came in the room.  Isaiah was right by his side the whole time, encouraging him and being a brother.  When it was time, I sat him up on the desk.  He was still uneasy and wanted to leave, but he sat still.  The class was so sweet.  They did all they could to make him more comfortable.  They gave him candy, were calm and encouraging to him.  It worked.  :)  He stuck his chest out and Matt rubbed on the chloroprep.  Then, he kept his chest big and turned his head to the side to be sure not to breathe on it.  He kept his chest big when Matt put the needle in.  He is used to numbing cream.  One of the students asked him if it hurt, and he nodded yes, but stayed focused and still.  Matt explained each step, talked about hemophilia, and emphasized the importance of sterility during the treatment.  I was able to say a few things too.  Eli didn't want to say anything, but he was free to speak if he'd wanted to speak.  I was encouraged that one student asked if they should wear a mask to access ports.  After the teacher answered her question, I told her that any effort made by a nurse to keep a port safe from infection means the world to parents.  A mask, extra alcohol swabs, careful sterile/clean technique earns a lot of respect in the eyes of parents, not to mention the obvious benefit of protecting the patient from port infection.

After Matt de-accessed and I was holding pressure with the gauze,  many in the class came up to thank Eli and compliment him on how well he did.  One girl even gave him some money!

I am very grateful that we had the opportunity to share prophy and our knowledge and experience with ports with the nursing class today.  They were very grateful to us too.  I am so proud of Eli for being so brave even when he was a little uneasy at first and had to be accessed without numbing cream.  I think he helped a room full of nurses be better nurses.

Thankful

Often times, the scary stories get the spotlight, and understandably so.  However, I think it is very important, especially to new hemo parents, to highlight the good stories too.

Today, I was (am) terribly heartbroken for another's grief.  In my heartache, I look at Silas, who had fresh blood smeared on his face.  "Uh oh, buddy.  Come on." I said as I scooped him up and prepared his 2mls of Amicar.  He took it without any struggle.  I cleaned off his face.  The bleeding was from under his front lip, and the Amicar immediately went to work and got it under control.  Silas got down and continued to play.

A couple hours later, Eli was standing on the highchair to reach something.  He fell behind the chair, twisting his body, and hitting the floor hard.  I jumped up, scooped him up, and carried him to my bed.  Ana got the computer to start a show for him, and a bag of frozen carrots for his ankle (frozen veggies work better than ice packs!).  I put his cream on his port, and set up his factor treatment right there in my room (it really helps to have a wheelie cart).    I gave him his factor, and he's fine.

Both of these situations were quickly and easily handled because we had the tools necessary to handle them.  I couldn't be more thankful.  I am so thankful for factor.  I am so thankful for amicar.  I am so thankful for the bookcase full of medical supplies in the dining room.  I am so thankful for the excellent training we received in CA by our first nurse, Richard McGaffic.  I am so thankful that our boys have never had inhibitors, and that if they ever did, there is treatment.

Let's hold each other up through the inevitable hardships that come, but let's always take the time to count our blessings.  

A Prophy Day with the Reeves Family

Today, Isaiah worked very hard photographing prophy to help me with this post.  I am very pleased to invite you into our home, and share our prophy routines with you.

Isaiah Reeves, photographer

"Time for prophy!" I call out to the troop.  Everyone scrambles to get their prophy treat from the prophy treat jar.  They are only allowed one prophy treat, and only on prophy days.  Here's Ana offering you a prophy treat.  Everyone gets one, hemo or not.  We're all in this together.  As you'll see in this post, we all have a part to play.  Prophy is a family event.
When everyone gets their treat, it's time to get started.  We keep our stock of prophy supplies in the big bookcase you can see on the left.  There's even excess supplies in the bottom cupboards.  I just forgot to open them up for the picture.  We used to keep the factor in a little fridge.  Well, the fridge broke, and it was soon after that they told us that the factor didn't need to be refrigerated anymore.  So, now, we organize the different unit amounts in the drawer in the bookcase.  Here's Malakai showing you the factor in the picture below:

We also have a "prophy cabinet" (shown below). This is where all the action happens.  There is a little of almost every supply in the drawers of the cabinet, and we set up right on top.  It's on wheels too which is VERY convenient.

Before I set up, the hemo boys get their numbing cream on their port sites.  Eli hammed it up for these pics!

 

After the cream is on, I let Eli choose what he wants to watch for prophy.  When Silas develops an opinion on this, he will get to choose too.  Today, he wanted to watch The Aristocats.  Usually, it's a show, not a movie, but it was fine for today.  Then, it's time to set up.  I won't go into all the detail of each and every step that is involved with this, I'll just show you the finished product.  Here's what the setup looks like for Eli's prophy (below).  The only difference with Silas's setup is the heparin.  Eli uses the yellow.  Silas uses the blue.

We're all set up, the cream is set, and movie is on.  Now, it's time to treat.  Eli goes first.  I take off his shirt, peel off the tagaderm, and wipe off the cream with a gauze pad.  Then, I clean his port site with chloroprep.  He knows to make sure no one touches or breathes on his port while I go wash my hands and put my sterile gloves on.  If anything makes him concerned about his port's sterility, I clean it with another chloroprep.  This has happened a couple times.  When I come back gloved, his port is dry and ready to be accessed.  As you can see in the picture below, he is completely numb and busy watching The Aristocats while I accessed him.

We call the pull back of blood the "little red snake".  Sometimes, the kids (Eli included) call "Come out come out, little red snake!".  Then, Eli tells him to "go back home!".  You can see little red snake in the next pic:

When prophy is over, it's time to snuggle.  Hemos need to hold pressure with gauze on the site a little longer than non-hemos.

After at least 5 minutes, we check to see if there is no more bleeding.  Then, a little band aid over his port means Eli is all done!  Well, after he helps clean up the prophy garbage.  ;)

Eli is done.  Now, it's time to set up for Silas.  After each setup, I take the stickers off of the factor bottles and stick them on the calendar, and now include color coded initials.  There's today's treatment (Well, yesterdays, now) on the 9th:

"OK, Silas.  Your turn now, buddy!"  I put him in his bouncy chair, and Ana gently holds his hands to keep him from touching or grabbing things he shouldn't.  After his cream is wiped off, I wash my hands.  I get my sterile gloves on, and then clean him with chloroprep.  I can't trust it to stay sterile while I'm gone like with Eli.  I give it a bit to dry, access his port with the huber needle, and administer his treatment.  < Thank you, Lord, for that numbing cream! >

When he's all done and deaccessed, it's his snuggle time with Mommy!  Ana did a great job!  Silas's snuggle time is a little less relaxing than Eli's because he just wants to nurse.  YOU try holding a baby while holding pressure on his port, and nursing at the same time!  I've done it.  It's not easy, but it can be done!  However, I opted not to today.  I really could use more than 2 arms!

(The towel on my head is to protect prophy from my hair. It works very well.)

Now, our prophy day is complete!!  Thanks for joining us today!  

SCAR +++++

So much has happened since my last post, the biggest being Silas's port surgery.   He had a joint bleed and a muscle bleed, and we needed to get him on prophy to prevent more bleeds. Everything went well.  We were very impressed with all the doctors, nurses, and staff at Peyton Manning Children's Hospital in Indianapolis.  The picture I posted to the left is my favorite.  Silas is such a sweet tempered baby.  He even smiled and waved when the child life specialist was taking him away for his surgery.

We had a lot of support.  My friend, Tiffany watched the older 4 children when I had to take Silas in for pre-op meetings.  My parents came down to watch the children at home while I was with Silas for surgery.  Matt couldn't come right away (clinicals).  So, my Dad stayed with us in the beginning.  While we were in IN, our life long family friends, Tom and Virginia even came down to help.


The hospital was amazing.  They took excellent care of Silas with so much love and compassion.  They also took care of me as the mom.  I was well informed during the whole process, and I could tell that they cared about all my concerns and desires as the mom.

Matt came to the hospital that evening.  He brought Eli with him.  Eli needed prophy while we were gone.  So, it made sense to bring him and treat him there.  It was a sweet time.  Eli and Silas really bonded on a new level.  Their hemophilia gives them a unique bond, and now they would both be on prophy.  Eli has just blossomed since Silas got his port.  He is thinking of Silas now, not just himself.  So, he sticks his chest out more, and never whines or complains about the needle.  Silas watches him.  It is precious.

After a few days, we came home, and continued the post-op factor treatments.  When we got home, we were blown away at the amount of work my parents and Tom and Virginia had done in the house: cleaning, repairs, new improvements.  Words cannot express how thankful we are for the work they've done.

Silas's surgery was two weeks ago, now.  We have had several perfect prophy treatments at home, until yesterday.  He has developed a hematoma over his port.  We're not sure why this has happened, but until it's cleared up, we are treating the bleed peripherally [via ER :(  ], then he will undergo a dye study to check his port for leaks.  If there is a leak, his brand new port will have to be replaced.  This is such a heavy burden on all of our hearts right now.

Yesterday, soon after a sponge bath, Silas's steri-strips finally came off.  So, now his scar is visible.  It looks very healthy, but it is still a big ugly scar on my baby's little chest.  Late last night,  as I was nursing him in the recliner, that scar was staring me in the face.  It (along with the newly developed hematoma) was making me sick to my stomach.  Nobody wants to see their baby's perfect little chest with a big scar on it.  It broke my heart, and I was tempted to mourn over this.  I couldn't let myself.

I started to think about all that scar represents:  All the hours of prayer and discussion over the decision to get a port, all the thought and love that motivated us to go ahead with the port, all the sweet nurses who tried (and often failed) to treat him peripherally for a bleed at the ER, the 3 1/2 years we've worked with Elijah's port, the intense training we received during Eli's post-op hospital stay those 3 1/2 years ago, the amazing support from all of Silas's brothers and sister, all the hard work that went into developing the technology of the port, all the years of study that Dr Kokoska (surgeon) and Dr Bush (anesthesiologist) spent in medical school, my parents and Tom and Virginia coming to help from Michigan, Bubble Wrapped Birth and all the love and support here, all the people around the globe praying for Silas, freedom to treat bleeds at home, and prevent bleeds with prophylaxis. . . The list is virtually unending.

So, I have a choice.  It's all about perspective.  I can choose to weep over my baby's now scarred chest, or I can choose to rejoice over that beautiful unending list of blessings when I look at Silas's scar.  So much love and care is represented there.  I just hope and pray that his port is o.k., and he doesn't need it to be replaced.  One step at a time.  God promises to take care of us, and we have to choose if we will trust Him or not.  I have to trust Him.  If I didn't, I couldn't get through this.

Thanks, Mom and Dad.  You both have taught me to have the correct perspective, and you were the inspiration for this post.

Isaiah, #1

Isaiah

There was a time when there was just one.  One who stole my heart.  One I spent every moment of every day and night with.  One child.  I was always holding him, rocking him, laying down with him, nursing him, bathing him, "slinging" him, changing him, kissing him, reading to him, singing to him, or dancing with him.  He was my day and night.  He was our baby, the one and only.  So special.  What an amazing, smart little guy.

I remember nursing him when I was pregnant with Ana until my belly filled my lap and it was pretty awkward to hold him sometimes.  Then it would bring on the contractions, OUCH.  The night Ana was born, Isaiah got right in the pool with us.  He loved her instantly.  I nursed them together right there in the pool, the expert and the rookie.  He was still sleeping in our bed when Ana came along.  I put a mattress next to the bed a couple months earlier so he could get used to his own bed.  He did a really good job because I was right there and he knew he could count on me if he needed me for any reason at all.  He often climbed up to our bed or I went down to his.

Isaiah holding me through my labor with Elijah

A couple more years past and I was having our third child, Elijah.  Isaiah wanted to help me so much, and held me through each contraction.  His little pajama shirt was getting wet from my arms.  He held me tight.  He was such a great big brother to Ana already and was so happy to now have a little brother.

When Eli was 4 months old, we found out that he had hemophilia.  We were so scared.  I didn't know anything about hemophilia.  Isaiah was scared too.  It became apparent that he was having some anxiety about keeping his baby brother safe.  He was worried that he or someone else would do something that would hurt him and make him bleed.  Isaiah was only 4 years old.  That is a heavy burden for such a little guy.  Of course, we talked a lot about it, but nothing could really take it completely away.  The fact remained.  His baby brother had hemophilia.

Isaiah and Elijah at NHF Denver 2008

The next year was the hardest for our family:  My husband lost his job. Eli had his port surgery.  I found out I was expecting #4.  We moved from the West coast to the East coast.  In my third trimester, I had to make quick decisions for a birth plan that now included possible hemophilia in the mix.  Ultimately, we decided on a hospital birth with a midwife, but fought for a waterbirth.  A few weeks later, our fourth child, Malakai was born making history as the first waterbaby at Women's and Children's Hospital of Buffalo.  He did not have hemophilia after all.  We brought him home the next day.  Isaiah, Ana, and Elijah were absolutely thrilled with their new baby brother.

A year later, I was expecting again, and we were moving again.  My husband was going back to school to get an RN, and eventually go into hematology to help other families with hemophilia.  So, we moved to the midwest and had an awesome homebirth for our fifth child, Silas.  Cord blood testing showed that he did have hemophilia.  When I told Isaiah, you know what he said?  His eyes lit up and he ran out to tell Eli that he had a hemophilia buddy now.  That boy is just amazing and full of love.

My dad, Isaiah, Me
Eli, Ana
Malakai, Silas

He is 8 now, and older brother to 4 little ones.  He is a cub scout, brilliant mathematician, avid reader, scooter and bike rider, gardener, my righthand man, video game champion, and he loves to take care of people.  Sometimes, his "older kid" needs are set aside because the baby's or another little one's needs are more pressing at the time.  I want that to be different.  Not only is Isaiah loved and important just because he is our son, he has given so much to his family.  He has dealt with a lot in 8 years.  I love him so much, and I appreciate him.   Tonight, after the younger 4 were in bed, I hung out with Isaiah on his bed.  We read his Sonic the Hedgehog comic book together.  It was so nice to have that special fun time with just him.  We need more moments like that.  And I really need to learn to catch properly with a glove because the last time Isaiah was trying to teach me. . . I totally stunk.  ;o)

Jealousy

Over the past few weeks, I have learned that our oldest son, Isaiah, has some jealousy about hemophilia.  We talked about it a lot. I asked him to draw pictures of what he'd like about having hemophilia and what he wouldn't like.  He liked the idea of getting prophy and going to the HTC for an appointment just for him.  He didn't like the idea of getting his blood drawn, though!  Then, he drew what he liked about Eli and Silas having hemophilia and what he didn't like about them having it.  He liked nothing about their having it, and didn't like how Eli couldn't play with them when he got prophy.  He told me that he felt Eli got all the attention because of his hemophilia.   

I was so sorry and heartbroken that he was carrying these feelings with him.  He never acts like he's jealous.  He is very protective of Eli and Silas because they have hemophilia, and he was so pleased for Eli when he heard that Silas had hemophilia too.


So, our conversation got me thinking.  Yes, some of us need factor, but whether we need to get prophy or not does not make us who we are.  I talked to Isaiah about it, and he listened.  Now, I am trying to pay closer attention to what is unique and special in each one of my children's lives instead of our current "affected vs. unaffected" tally.  I am still new at this and I'm learning.  And right now, I am being reminded that. . .

I am not only a hemo mom, I am a mother. 

"He has it." I said to my midwife. . .

It was evening.  Matt had taken the cord blood up to the hospital, and had been home for a few hours.  We'd taken our herb bath and were now resting and breastfeeding in bed.  Now, Matt was on the phone with our hemotologist getting the results of the blood test.  He was on the phone for a long time in the next room.  That was my first clue.  Then, I heard him say, "No, we haven't seen any bruising at all." 

"He has it."  I said to my midwife. 

Matt got off the phone and confirmed that I was right.  The first thing I felt was a heaviness.  Here's this perfect baby boy nursing in my arms, and now we know that he has a severe bleeding disorder.  Of course, I was not shocked or suprised.  We knew he had a 50% chance of inheriting my gene mutation.  However, knowing it's a possibility and finding out it's a fact are 2 very different things.  I didn't cry.  I just felt some heaviness in my heart as I thought about what was ahead for this sweet baby. 

Our midwife left.  Then, Matt called Eli into the room.  Both of us wanted to tell him first.  When he heard that Silas had hemophilia just like he did, his little face softened in a way that I'd not seen before.  He moved over to Silas, and warmly said, "Aw, Silas!".  He had the most loving smile on his face. 

"Do you want to hold him?"  I asked.  He did, and climbed up on the bed to hold his new baby brother. 

Perhaps even sweeter than Eli's reaction was Isaiah's.  When we told him that Silas had hemophilia, his face lit up with excitement.  "Really?!"  he exclaimed, and he jumped up and ran to Eli.  (He was unaware that Eli already knew, and ran out before we could tell him.)  "Eli, guess what?!  You have a little buddy now.  Silas has hemophilia just like you!"

Of course, Silas didn't have to have hemophilia to be Eli's buddy, but we knew what he meant.  It was so precious!

I had my cry later that week when I checked facebook and read the tragic story of a little boy with hemophilia in the Philippines who recently died because he couldn't get the factor he needed so badly.  It was too much!  "That's our boys, honey! If we ever couldn't get factor, this could be them!"  I cried to Matt.  I really cried.  It's been a while since I cried that hard.  We talked for a while.  I asked Matt, "Is it ever hard for you?"

He replied, "No, it isn't.  I just look at it as something God has put in our lives for a reason, and we just need to make the best of it.  That's why I am going to nursing school to be a nurse and help."  Matt wants to be a nurse manager in pediatric hematology.  He wants to help other families the way our nurse helped us.
 
"Why did God have to mess up my X chromosome?!"  I sobbed.

Matt said, "I don't know, but honey, look at what you are able to do because of this (BWB) and all the people you've been able to meet."

I said, "But, honey, I would give it up in a heartbeat in exchange for my children's health!" 

After more crying, talking, and hugging, I started seeing something I didn't see so well before.  God gave this to us as a gift.  He put us right in the middle of a special group of amazing people.  It is our blessing to know them and love them. 

No, hemophilia does not define Eli or Silas or our family for that matter, but it is a part of us.  It's a very special part because it is not just a bleeding disorder, it is a new family into which we were welcomed with open arms.  God bless you, dear hemophilia family.  You are a gift from God to us, and I pray that we can be as much a blessing in your lives as you are in ours. 

Little Hemos are Little Stinkers Too!!

I am dying to get Silas's birth story written and video edited, but until then, here's a funny little story that happened this week:

A couple days ago, the kids were playing in the backyard.  Eli tripped and fell.  He got a little scrape that didn't even bleed, and I cleaned it up and bandaged it.  Then, I put him down to go back outside.  He wouldn't stand on that leg.  He was having a knee bleed.  So, I set up and gave him some factor, and his older brother and sister (Isaiah and Ana) made him a little bed on the couch and got a movie playing for him.  That night, I made a little bed for him on my floor so he would stay off of his knee during the night.

Eli and his new baby brother, Silas

Yesterday, I was still keeping him off of it.  As all of you with hemophilia in the family know, this gets pretty boring very quickly for a little guy!  Last night, I put him up on my bed while I was taking care of the other kids.  I said, "You can stay here, and when it's time for bed, I'll tuck you in (in the little bed on my floor)."  "Ok!" he said with a smile. 

After a short while, I went back to check on him.  He and his little brother, Malakai were jumping and dancing all over the bed!  Eli was watching himself in the mirror and singing, "You have to stay off your knee.  Off your knee.  Off your knee!"  As soon as he saw me, he dropped to the bed.  I could not say a word.  I just looked at him (who was looking at me with a very guilty face), and walked back to the living room.  I told my mom what happened and we both just cracked up! 

This morning at breakfast, I told the kids what he did, and everybody laughed.  Little stinker!!!