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."

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)

Why Hemophilia Isn't Stopping Us from Having More Children

Ana 2010

Soon after Matt and I got married, we agreed that we would have as many children as God gave us.  We put our faith in God, trust in Jesus and believe the Bible.  God always refers to children as a positive thing: gift, blessing, treasure, reward, inheritance, etc.  We were both uncomfortable with any form of birth control.  It just didn't seem right to us to try to prevent a possible gift, blessing, treasure, reward, or inheritance that God might have for us.

So, we were very delighted to find out we were expecting our first little blessing right before Thanksgiving, just 5 months after our wedding.  Then, we were filled with grief when we buried that sweet baby just a month later.  I have given birth to 5 healthy babies since then, and I can tell you that the pain of miscarriage is the pain of death.  The pain of birth is life, and so much easier.

Malakai, Eli, Isaiah, and Ana 2011

God filled our hearts with joy once again when we found out our little Isaiah was on the way.  We actually heard his heartbeat on our first baby's due date, an unexpected gift from God.  That day would've been very hard otherwise.  Then, after Isaiah was a year old, my womb was full again.  This time with Ana.  Isaiah got in the pool for her birth.  I caught her myself.  So priceless.  Then, our not so little Elijah came (10lbs 14oz!) less than 2 years later.  His birth was the most spiritual I've ever experienced.  It gives me chills to this day.

It was when Eli was 4 months old that we were introduced to the world of hemophilia.  He had a couple hematomas along his waistline.  Blood tests showed that he had less than 1% of factor 8, severe hemophilia A.  A few months after that, I was tested.  I thought he probably had a spontaneous mutation.  I didn't have any family history of hemophilia at all.  Well, I remember getting that call like it was yesterday.  The test came back, and I was a carrier.  My heart sank.  Was this my fault?  Could I have more children in good conscience now? What does this mean for my home births? All these questions and more weighed me down immediately.

Our family of 7 with Matt's Mom and Grandma 2011

We reexamined our original decision:  We trust that God would give us as many children as we should have, and He would give us the specific children we should have.  Had all that changed since hemophilia?  The truth was that if it had changed, then we'd never truly believed it.

So, we stuck to our plan.  A few months later, we were blessed again.  This time, birth planning was a lot different.  We chose to get an ultrasound to find out if the baby was a girl or a boy:  BOY.  Then, we started interviewing midwives.  It definitely puts a twist in the interview when you mention, "Oh, by the way, our baby has a 50% chance of having a severe bleeding disorder. . . "  It wasn't so easy finding a caregiver this time.

Then, my husband lost his job, and we moved clear across the country from California to New York where he got a new job.  Homebirth just wasn't working out this time, but we had a great midwife who had privileges at the Women's and Children's Hospital.  I insisted on a water birth to give my baby the most gentle birth I could.  They'd never had a water birth, but in the end, they approved my request.  We used our pool, and they moved the bed out to make room for it.  Malakai was born, making hospital history!  His cord blood test came back that he did not have hemophilia.

Malakai and Silas 2012

Malakai is now 2 1/2 years old, and his little brother, Silas was born last September.  Silas is 5 1/2 months old now.  We were able to have a totally awesome home birth with him, and coordinated with our new (moved again!) HTC to get the cord blood tested.  Silas does have severe hemophilia A like his older brother, Eli.  He has shown little signs of his hemophilia so far.

Matt and I are very excited to look forward to the future.  Our beautiful family is growing, and although they keep us hopping, we just love our little crowd!  If God wants us to have more children with hemophilia, then it is what is best for our family.  If not, then that's what's best.  We choose to trust Him.

Matt and I have lots of friends and family whom we highly respect that do not share our beliefs on childbearing.  We believe it is a personal choice for each couple to decide on their own.  I know that I may have lost some people when I mentioned God, but I wanted to share our heart with you, and I can't do that without mentioning God.

Anyway, isn't having any child a risk?  People who don't carry a genetic disorder are not guaranteed a perfectly "healthy" child every time.  Elijah and Silas are just as much a blessing to our family as Isaiah, Ana, and Malakai are.  I believe with all my heart that God has a special plan for each one of our children.  I believe that everything in their lives is there for that purpose, to make them exactly who they are meant to be.  No matter what happens, God always loves us and we can always trust Him.

"Carters Story" by Jenny Fawcett Ruklic

I've been a part of the hemophilia community now for 4 years.  One of the first things that impressed me was how many parents are the leaders in the hemophilia community.  One of these parents is Jenny Fawcett Ruklic.  It was a journey for her to even admit to herself that her son had a bleeding disorder, but she did.  Now she has an organization that is dedicated to raising funds for research to find a cure for hemophilia.  Recently, she posted her story, "Carter's Story", and I wanted very much to share it with you all.  Thanks, Jenny, for sharing your journey with us.  

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"Carter's Story" by Jenny Fawcett Ruklic:


Over the last few months, I have made so many friends via Facebook, and a lot have joined our Page Carter's Quest for a Cure, Mall in the Hall and Bids for Bruisers. The one thing that I think may be missing is our story. So, here is my rendition of what has inspired me to become the advocate I am for my son.

Jenny and Carter

Carter Stephan Ruklic was born June 12 2008, a beautiful 8lb boy with a beautiful head of dark brown hair.  The labour was interesting. I lost a lot of blood, and it took a really long time for the doctors to stop the bleeding, but I never thought anything of it.  I had a daughter 5 years earlier, and it was the same thing.  Everything went fairly smoothly.  We were released from the hospital the next day and sent home.  2 days later, the community nurse came by the house to do the heel prick and weight check.  All pretty routine until I thought of it later.  Carter`s heel bled for a really long time.  Again, I never thought anything of it.  The nurse took her information and left.

Carter and Cassie

The weeks went by, and I started to feel a little emotional, I think the beginnings of postpartum.  On week 4, we had an appointment to have Carter`s circumcision done.  My husband works crazy hours during the summer.  We own a landscape business.  So, he is working tons.  So, when the appointment came, I thought, "I can do this myself no biggie. . . " (Which, if I can recommend now: Take help when someone offers to go with you to this.)  The procedure was horrible, the most emotional thing I had ever had to go through.  I was crying and was so upset for seeing my son cry that way.

After the procedure was done, we went home.  I picked up my daughter from Aunties house, and we went home to spend the day in the wading pool and running through the sprinkler.  Since Carter was born, I was depressed and sad, and Cassie was missing her Mommy.  So, I thought I would spend the day with her hanging out.  Carter slept all the time anyway. Little did I know that this was the day that would change our lives forever.

When we arrived home, I went to change Carter`s diaper, only to find an entire diaper filled with blood.  I called my sister.  I hadn't gone through this.  I wasn't sure if this was normal.  She had a boy. . . She would know.  Tara told me there shouldn't be blood. . . PANIC. . .  All I could think was that the doctor ruined my son.  I called the doctor's office. He told me to go to the Children's Hospital.  I'm sure at that point he kinda knew, but nothing was said.  So, I called the husband, asked him to meet me there. Cassie, Carter, and I were on our way to change our Lives.

Jenny and Carter

We arrived at the hospital, and they took us right away.  They stitched up Carter with 2 stitches, apparently the circumcision split. . . owww, painful.  They asked us to stay for 1 hour just to see if it continued to bleed.  I was confused why would it still bleed.  Are they telling me that they don`t know what they are doing?  Anyway. . .  I sent Will back to work with Cassie.  He was in the middle of building a pond, and there was a storm coming.  So, he left, and I said I would call on my way home.  An hour later they checked and it was still bleeding.  In came the lab to take some blood work. I was so confused as to why they wouldn't let me go home. . . 

Two hours later, the blood work came back, but they are not telling me anything.  My brother in law shows up.  Roger didn't want me to be alone.  I hadn't called Will back yet, and then The doctors come back and say that there was a problem with the blood test, and they needed to run some more.  I tell them, "Fine, but what is going on?"  No one answers me.  Roger calls Will, and my husband is back with me at the hospital.

Around 7 at nite, we have been there for 5 hours. They send a lab tech in to tell us in very broken English that our son has a shortage of factor in his body.  I have no idea what he is talking about.  What is factor?  I just looked at Carter and started crying.  Keep in mind, I was still postpartum.  Finally, the hematologist comes in and tells us that Carter is a moderate hemophiliac. . . SHOCK. . .   He gives us the HTC information and tells us to come for a meeting with everyone on Wednesday, and they will be able to talk about everything and answer any questions.  I then spent the next 48 hours crying and sobbing, asking God why he would do this to Carter and our family.  I just wanted answers.

Jenny, Will, Cassie, and Carter

We went to the clinic and met the entire staff that was going to oversee Carter`s condition.  At this time we are also told that the lab made a mistake, and really Carter is a severe type A and not a moderate. . .  Do these people know what they are doing?  My blood was boiling. . .   They handed us this giant binder filled with really scary things: joint bleeds, muscle bleeds, spontaneous, what. . . , and on and on,  and a bag for the binder.  I felt like we were just given a prize for being the 100th customer.  lol

We went home, and I took the binder and bag and put it under my bed, cause as a child that is where the monsters go.  I spent the next 6 months in a state of depression.  My test came back.  I have 32% factor in my body.  It explains all the bleeding episodes as a child, and knee and ankle problems.  I also had Carter retested. . . denial.  So, 6 months went by, and I didn't want to talk about it or really acknowledge it until Carter had his first bleed:  rolled over on a toy and bruised his back right on kidney area.  So, I started to cry.  Then, all of a sudden, I stopped, looked at Carter, smiled and said, "Mom's got u".  I ran to our bedroom, and got the binder from under the bed.  The monster was looking me in the face, and I needed to help my son.  So, I took a deep breath and did what I had to: admitted that my son has hemophilia.

After that day, I have hit the ground running.  I engulfed myself with information.  We attended the society events and I even went to a women's weekend for women with bleeding disorders.  I met people and talked to everyone I knew about Hemophilia.

"Carter's Quest" Bottle Drop

2 years later, our lives have changed so much.  My son is an amazing little boy and normal.  We are joint bleed free, 2 muscle bleeds, and numerous soft tissue bleeds and head injuries.  He wears a helmet at times and knee pads.  I have managed to train in giving my son his infusions at home, no port, I find the vein 3 times out of 5.  I joined the board for the Southern Alberta Chapter of the Hemophilia Society.  We attend The Parents Empowering Parents weekend, which, if anyone has the opportunity to do, do it.  My husband and I are not anything special, but we love our kids and Carter is no exception.  Aside from the underlining condition, he is very normal.  He loves to cuddle, he loves to jump, and he gets hurt. . . 

I can`t change what we are going through, and I can`t take away the pain that Carter may go through in his life, but I can be his strength.  I can be here to tell him that he is special.  God chose us to be the ambassador to his needs.  I will do everything in my power to raise Carter and Cassie as I would any other children: with morals, strength and courage.  I am strong today because of my children and not in spite of them.

Over the last little while, I have met some extraordinary people, and I will cherish their friendship through Facebook.  I love all my hemophilia friends.  Thanks for being here to help guide my way.

Love to all. . . 

---------->  Click here to visit the Ruklic's website <----------

Meet Craig Wright

Craig Wright

Over the past few months, I've been learning a lot about a man named Craig Wright.  Craig was born in August of 1953.  After he was born, he was diagnosed with severe hemophilia when he cut his lip and it wouldn't stop bleeding.  He spent a lot of time in the hospital because of his hemophilia and received gallons of blood from numerous donors.  Life for a hemophiliac was much harder back then.

Craig grew up on the family farm in Prince Albert, Saskatchewan Canada.  At a young age he expressed a desire for farming.  He was told that he should give up that dream because a life of farming would be too dangerous for a hemophiliac.  That did not stop Craig from following his dream.  He grew up to take over the family farm.  He married, and he and his beautiful wife were blessed with 3 precious children.

Craig with his family

However, the Wright's lives were turned upside down one day when 32 year old Craig learned that he had contracted AIDS from bad blood.  His daughter, Ashley recalls:  "I was quite small (maybe 5-7 years old).  I remember seeing one (commercial on HIV/AIDS) and saying, 'Hey Dad, that's you, right?' and immediately after running to my room because I thought I would be in trouble for speaking about it. We all knew, it was NOT something you brought up!"

Ashley remembers telling her best friend about her dad's condition.  "It was the middle of winter and recess time and I asked her to sit with me on a little snow hill and told her."  Her friend didn't understand the reality of the situation, but knew she was sworn to secrecy until Ashley decided to tell others.  It was three years later in 6th grade that Ashley decided to share the situation with her classmates.  She never imagined that her dad would be laid to rest before she would finish 7th grade.

Craig's daughter, Ashley with her son, Parker

As Ashley shared her memories with me, I was deeply impressed with her parents.  Ashley remembers, "They came into the school and did presentations for the class as well as the parents, and I know they had to go through a whole bunch of red tape to even think about discussing such a topic with children.  I remember being scared but yet so proud of my dad for standing in front of the class and explaining to them in children terms what was going on in his body and why.  Needless to say, the children took it better than the parents.  I distinctly remember at the parent info meeting, the parents of the children in my sister's class saying, 'We do not want your daughter playing with our children.'  How do you even respond to that?!  Being a mom now, I have no idea how they handled that without tears!"

Ashley remembers that her dad missed being in his band.  She also remembers the "countless hours and hours he spent on the phone with lawyers and conference calls as well as the many trips to the lawyer's office or the lawyer coming to the house."

Craig was driven by truth and justice.  When he was infected with a deadly virus as a result of others' mistakes, he wanted those responsible to be held accountable.  He dedicated the remainder of his life to fighting for compensation to the families affected by bad blood and holding the responsible parties accountable.  He was deeply involved on "The Krever Commission".  This commission fought for better blood screening, safety of blood products, but mostly for the compensation for the affected families of bad blood.

Craig's grandaughter, Charlie

The Globe & Mail June 1, 1996 states,

"The mandate of the Krever inquiry is twofold:

-Determine how and why more than 1,200 hemophiliacs and transfusion recipients contracted between 1980 and 1985 the virus linked to acquired immune deficiency syndrome and why another 12,000 Canadians contracted hepatitis C from blood and blood products between 1980 and 1990;

-Recommend ways to revamp the blood system so a similar disaster is not repeated."

From studying the documents that Ashley sent to me for this post, I learned how the organizations responsible for the bad blood epidemic were quite upset about the Krever commission.  They thought that the notices of "potential misconduct" should be quashed because they unfairly stigmatized them. 

In 1993, Craig was interviewed by The Leader-Post.  He stated, "The knowledge we are getting now is the governments knew in 1982 and didn't act until 1985.  The time frame is so bizarre, . . .  How do you justify not letting hemophiliacs at the grassroots level know?  How can they justify not publicly putting out a news blurb saying:  'Hemophiliacs, be careful,'?"

In the end, Craig was not completely satisfied with what the courts decided the compensation should be, but he was told that it would be another 7 years before it would make it in front of a judge again.  Since he knew he wouldn't live long enough to see it go to court again, he agreed with what would be given.

It seemed that as soon as Craig knew that his family would be provided for, his body started shutting down.  Then on May 9th, 1996 in a Saskatoon hospital, 42 year old Craig Wright passed away.

Craig's grandson, Parker

I am so inspired by the life and legacy of Craig Wright, and I am so very saddened for his life that was lost.  We can all learn from this man's example.  From the moment he learned of his hemophilia, he decided that it would not keep him down.  Craig lived his life to the fullest.  He was loved and respected by his family, friends, and even people from his local and national government.  When carelessness led to his contracting the AIDS virus, he did not roll up in a ball and sulk or give up.  He let it fan the flames in his heart.  He stood up and fought for his family and many others.  When AIDS ultimately claimed his life, many honored him.

One of the saddest parts of this story is the grandchildren who never got to meet him.  Craig's daughter, Ashley, is brokenhearted that her little ones, will never know their grandfather who was such a hero.  No, Charlie and Parker will never look into their grandfather's eyes as they grow up, ride on the tractor with him on the family farm, listen to their grandpa's singing and guitar playing, or hear his stories from his own lips.  But, I believe they will know their grandpa.  He lives in the hearts and memories of so many people.  I believe Charlie and Parker will be inspired by their very special grandpa's legacy.  Parker's blood inherited the mutated gene carrying hemophilia, but that blood has a legacy of much love, determination, and strength in it from his grandfather, Craig Wright.

"Why Home Birth?" by Stacey Rainer

The following was written by a hemophilia mom who worked as an OB nurse.  With her permission, I have republished it here from where she originally posted it on "cafe' mom" back in June 2007. 

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So, someone asked me why I choose home birth, so I decided to write a journal entry to explain it, as I think it's too long for a reply to a previous entry.

First, my birth history. My first three pregnancies were induced because I had high blood pressure. The first was the worst, but the other two were not far behind. I was over 39 weeks each time, so no preemies or anything. I was never sick enough to need meds for my blood pressure. The first two times, I had Pitocin to start my labors. The third time, I did not want it, so I requested to be induced by rupture of membranes. By this point, I had been an OB nurse for a year, so I had a pretty decent working knowledge of the birth process from more than just a participant. During my pregnancy, I began to question circumcision. I talked to several doctors about it in the course of my work, and decided I'd not do it to my children. I had all girls up to this point. After that third baby was born, during my foray into the anti-circ world, I became acquainted with things like not vaccinating your children and home birth. When that child was 9 months old, we made the decision to stop vaccinations. I also decided that my future children would be born at home.

Two years later, I was pregnant again. I could not find a midwife in my new state, Illinois. So, I called a midwife I knew back home in Kansas, and asked her if she would attend my birth. I would travel there at 37 weeks or so, and hang out with my sister until I went into labor. It was all arranged and working well, until 7 weeks along. A sonogram showed twins. I immediately dismissed my home birth plans and while I hoped desperately for a vaginal birth, I knew my chances were slim. I was right. C-section for "unfavorable" position. After that, I'd had it. No matter what happened, I was having a home birth next time. Of course, I still have not found a midwife. Not to be one to wait until I needed, I got on the internet and began searching shortly after my boys were born. Didn't find a midwife, but became acquainted with something else new. Unassisted home birth. This was cool! By this point, I'd been working in OB for 4 years. I felt confident that we could do this. So, two years later, when I was pregnant again, this was the plan. I opted for an unassisted pregnancy as well. I did my own prenatal care. I did finally meet a midwife, just 2 weeks before she was born, but I had already made my plans, so stuck with them. I had a fantastic, 2 1/2 hour birth, in a pool in my family room. It was the most amazing thing ever! I knew then, that I'd never have another baby in the hospital again. So, two years later again (yeah, I know. I have a pattern), when I became pregnant, we didn't even discuss it. We knew we'd be having another unassisted home birth. The time came when labor started, and it was a long, grueling, 52 hour labor. I required a bit of assistance this time. I was ready to throw in the towel and head to the hospital at 50 hours. A midwife friend came over, broke my water and left. Two hours later, I was holding my screaming baby boy.

That's the birth history. Now for the whys of it all. During my career as an RN, I began to see how much stuff is done to women simply because it's what's easiest for the care providers (OB and RN). It's much easier to watch a continuous feed of fetal monitoring at the nurse's desk than it is to hunt down the walking mom every 15 min. to listen and count with a doppler. It's certainly more convenient to break mom's water or give her Pitocin when things are going a bit slower than the OB would like so he can "get that mom delivered" by a decent hour. Those late nights are hard, after all. I began to realize that birth is so much less traumatic both for mom and baby when it's left alone. However, it's nearly impossible for birth to be left alone in the hospital. Everyone's got to get their hands in it, literally. That's not something I want. My first baby was taken to the nursery for the first 6 hours of her life. I needed to rest, you see, because of my blood pressure. It was the longest 6 hours of my life (longer than that labor had been, actually). I hated it. My second was given for adoption. My third, the took her from me, put her in a baby warmer where I could see her. She was messed with, poke with a vit. k needle and a hep b needle. Junk was put into her eyes... she was exhausted by the time I finally got to hold her. She was way too tired to breastfeed. Fortunately, it didn't hamper future attempts and she nursed fine. My twins were taken from me since I had to go to recovery. But, by then, I knew to request no needles, no goop. I wanted them alert when I got them back, so they would nurse and so I could meet them. That was fine. I only had to wait an hour to finally hold my babies. It was better than before, but still not ideal. When my twins were 5 months old, one of them was diagnosed with hemophilia. His blood does not clot properly. So, things like a circumcision, or an intramuscular injection can cause bleeding that won't stop. Thankfully, we'd avoided that. However, the question then became, is it safe to have a home birth when this is a possibility for future children? Well, the next baby was a girl and I knew she was before she was born, so no worries. Then came Ian. There is a 5% risk of bleeding on the brain with vaginal birth. After some reading, I discovered that the risk of this bleeding without the use of instruments to deliver goes down to less than 1%. Well, that's a no brainer. I don't own forceps or a vacuum extractor so there was no concern about an instrument delivery (however much I thought I wanted one by the third day of labor). Well, I knew this baby was a boy, and I knew he had hemophilia. I did not know this through any tests of any kind. I just have a great gut instinct for this kind of thing. Well, he was born, I drew blood from the placenta as we'd arranged, and my husband took it to the clinic for testing. I was right, but my baby was fine. Some would suggest I got lucky. I would say I planned things in such as way as to be sure my baby would be born gently so that there was no risk of bleeding of any kind. Let's talk about risk of bleeding, since this was a question asked of me. Besides that less than 1% risk of brain bleed jumping to 5% in the hospital, there are many other opportunities for a hospital birth to actually cause bleeding. Artificial rupture of membranes - bleeding from the big scrape that is now on the scalp. How about that deep suctioning they do after birth? GI bleed. Rough handling, flicking of the feet, vigorously rubbing the back all to stimulate crying - muscle bleeds. IM injections - muscle bleeds. Of course, there is ample opportunity in all of this for big ugly bruising to be left behind by uneducated staff. This all just addresses the hemophilia. But why home birth at all?

Ultimately, I have a very strong faith in my Maker and the way He created me. I am a strong, healthy woman. My body was designed to conceive, grow, carry and finally birth a baby all on it's own. I also believe that a vast majority of fetal distress and failure to progress cases are caused by hospital intervention. The use of continuous fetal monitoring has NOT improved outcomes when it comes to fetal mortality. It has, however, increased the incidence of c-sections 3 fold. Pitocin has become a drug of convenience rather than emergencies. Docs going out of town? No problem We'll induce before she goes. Mom is only here to help you for one more week? Ok. Let's induce. You're due tomorrow? Well, let's just get you scheduled. Something like 90% of all inductions are not medically necessary. Labor's going to slow? We'll augment with Pit. Why? Oh, just to get it over and done with for you. Sheesh! No one even talks about the RISKS!! Yes! That's right! There are RISKS to this drug! In fact, it's not even approved by the FDA to use for augmentation! But, who needs to follow labels? Let's use this great new blood pressure drug, Cytotec to stimulate labor! So what if it causes ruptured uteruses? That doesn't happen to every one. Think of all the time that can be saved by getting labor started on a time table. Obstetrics is the only medical specialty that is not evidenced based. It's tradition based. There have been multiple studies that have proven the old ways are wrong but it's still going on! Why? Why is there such a need to manage something that works just fine on it's own? Pregnancy is not a disease. It's not a sickness. It's not an emergency waiting to happen. It's a normal function of life. We go to the doctor when normal functions aren't happening normally. Your hearts not working right? See a cardiologist. Blood not working right, as in our family? See a hematologist. Birth IS working right? See an OB anyway. Do you get it? Do you understand why someone might choose to flee as far and as fast as possible? Because what I DON'T get, is the American practice of obstetrics. I don't get it, and I won't have it. Home, where there is peace and gentleness surrounding the entrance of my baby into this world. There's enough violence throughout life. It doesn't need to start with the first breath of life.

"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.