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.

Boo-boos

Lately, I've been giving a lot of thought to my parenting.  We have 5 children:  2 boys without hemophilia, 2 boys with hemophilia, and one daughter who is a carrier and bruises often.  Things are going much better with the jealousy issue.  I am learning a lot. 

Now, let's talk about boo-boos.

One of the best ways to show your children they are special is in how you care for them when they are sick or hurt.  In a family where half of the children have a severe bleeding disorder, it would be easy to give our children the impression that it's not so bad if one of the "non-affected" children gets hurt.  If Malakai falls and hits his head, I scoop him up, cuddle him, comfort him, get an ice pack, kiss it and make it "all better".  However, if Eli falls and hits his head I do all the above, plus call the HTC, set up for factor treatment, call Matt at work, treat Eli, and Matt comes home and takes him in to the ER for a CT scan.  I've caught myself and my husband saying things like, "I'm so glad it was (non-affected child) and not (hemophiliac child)!"  Although it's true that it is less dangerous for a child without hemophilia to get an injury,  this shouldn't be the attitude, much less spoken.

Whether our child has a bleeding disorder or not, they need to be shown compassion, love, and loving care when they are hurt.  Pain is pain even without a bleed. 

Some great tools for boo-boo "tlc":
-snuggles
-kisses
-ice pack
-basic first aid
-band-aids (even when not truly necessary.  Besides, if you have prophy supplies, you have plenty of band-aids!!)
-breastfeeding
-special blanket or toy
-singing
-reading a book
-You know your child.  What would be on your list?

I am not saying that we should baby every boo-boo.  Obviously, there are levels of severity.  My point is that each child needs to feel like Mommy and Daddy are sorry that THEY got hurt.  They should never feel like it is a relief that it was "just them" and not their brother. 

I do not see a problem with this in our family yet.  Hopefully, seeing this now will prevent it from ever being a problem in the future, and be a good example to Ana if she has a family of some hemos/some non-hemos someday.

You may be wondering. . .

Silas - 1 month old

My sister, Julie, called me yesterday and wanted to know what would be happening with Silas now that we know he has hemophilia.  She asked some really good questions, and I thought some of you may be wondering about some things too. 

Q:  Is Silas getting bruises or bleeds yet?
A:  No.  Silas has no bruises.  Some of you may remember that Eli didn't get any bruises until those 2 hematomas showed up when he was 4 months old.  It is normal for hemophiliacs to have bruises (most always hematomas) all over just from normal life when they get more mobile.  These "superficial" bleeds do not need to be treated with factor, but bruising on a joint needs to be watched carefully as it may go into the joint. 

Q:  Is there ever any difference in severity levels?
A:  There are different levels of severity between hemophiliacs, but not within the same family.  My gene mutation is called 22 inversion.  That gene mutation is always severe hemophilia A.  Ana is a carrier like I am.  She bruises more easily, but she and I have another X that makes up for the hemo X.  Eli and Silas do not have another X.  So, they have severe hemophilia A, which means their bodies make <1% of clotting factor 8. 

Q:  When will he need to get factor?
A:  For the first year or year and a half of Silas's life, he will be receiving factor as needed.  For Eli, the first year included soft tissue bleeds in his cheeks (both sets ;o)  ) and worrisome head bumps (none turned out to be a head bleed). 

Q:  Will he be getting a port? and when?
A:  A port is not always a necessity; it is a choice.  We chose to get a port for Eli because we wanted to preserve his veins, and have an easy access in case of an emergency and a vein would be hard to find (dehydration, etc.)  We will probably get a port for Silas since it has worked out so well for Eli, but we will be making that final decision later.  He would get a port when he needs to begin prophylaxis.

Q:  When will he start prophylaxis?
A:  He will begin "prophy" when he is 18 months old or when he gets his first joint bleed.  Whichever happens first.

Q:  Are we doing anything extra to prevent bruises and bleeds?
A:  Yes.  He will start wearing a comfy cap when he starts spending more time on the floor (for 4 obvious reasons ;o)  ).  We bought a sleepy wrap because it is stronger and softer on him than a Maya Wrap or Moby Wrap.  We were not planning on letting him use the jumperoo, but some of my online hemo mom friends told me that they did not have any problems with the jumperoo at all and in fact, it helped their boys' legs get stronger.  Another mom suggested a product called Hugga-Bebe.  It is extra padding made for jumperoos and exersaucers.  It looks excellent, and Matt and I are looking into getting one and trying the jumperoo.  We will use knee pads and elbow pads to protect his joints, and pad his clothing.  By the way, an excellent company that makes padded clothing is Bruz Wear.  We have one pair of pants from them, and they're adorable!


I added a few more questions than Julie asked, but you may even have more.  Please ask anything in the comments section below.  We love to help people gain a better understanding of hemophilia.  Sometimes Blogger doesn't let people comment.  If that happens to you, let me know.  You can comment on facebook or email me at bubblewrappedbirth@yahoo.com

Love and Guilt

Eli, Malakai, Isaiah, and Ana

I know that it is not my fault that 2 (maybe 3) of my children are affected by hemophilia.  I know that genes are more than just  a mutation, and that only those particular X chromosomes would've made each one of our children.   If they had recieved any other X, they would be a completely different child.  Looking at it like that, it makes it easy to be thankful for everything that comes with or does not come with my children's genes because I want THEM.  If hemophilia comes with the package, so be it.  However, last night when Ana showed us a mysterious bruise that she discovered on her hip, I felt an unusual weight of guilt. 


It doesn't make much sense.  I know all the facts.  Maybe it's just because I'm extra emotional with Silas's birth coming so soon.  I don't know, but when I looked at that deep purple bruise on my little girl, I felt like I did that to her.  She is a little ballerina.  She loves all things to do with homemaking and babies.  She is the spunkiest little girl I've ever met.  I love her so much. 

I don't need to feel guilty.  If carrying hemophilia is part of what God has for her life just like it is part of what He had for mine, I praise God for it.  That sweet little princess is going to take the world by storm!  She will have opportunities to reach people that she wouldn't have otherwise. 

I am concerned for some things like:  Will she have any bleeding issues when she hits puberty?  Will she have any issues with childbirth?  Will her factor level ever go lower?  I don't know the answers to these things, but God does.  He loves her even more than I do, and I trust Him.

I Have a Dream. . .

Well, it is very late, and I should be dreaming in my sleep.  Instead, here I write on this blog that holds so much of my heart.  We are officially 38 weeks now that it has hit midnight.  Birth is on my mind even more than usual.  Why do I do this?  Why did I even start Bubble Wrapped Birth?  Why bother?  I'll tell you why.  This is something I believe in with all my heart.  I learned about gently birthing my babies before I knew what the word hemophilia meant.  I want to get the attention of those who have a voice that can make a difference or be that voice myself.  There is a better way, a safer way to protect our little ones through the birth process.  I have a dream that someday our recommendations for delivery will include more than they do now.  Things like:  no pitocyn, avoiding epidurals, getting us up off of our backs, keeping the mom comfortable and making freedom of movement an essential priority, considering water birth, and no forceful pushing.  We can work with our bodies.  We do not need to fear birth.  God did create our bodies to do this.  We are strong.  Our babies are affected so much from birth.  Birth does matter!  Someday, my little girl may have the honor of motherhood, and she will need to choose what is the safest way to birth a possible hemophiliac.  I am doing this for me, for you, but mostly for her.  Goodnight, dear readers.  Sweet Dreams. . .

"Pushing" for a Gentle Birth

My husband and I have had 4 beautiful all natural water births, and are looking forward to our 5th in the next few weeks.  If you've read my birth plan, then you may have noticed #6: "I will not start pushing until my body starts pushing on its own. If I get an undesirable urge to push before then, my midwife will check to make sure I am fully dilated. Ideally, I will try not to ever push to make sure the baby comes out as easy as possible."  I want to use this BWB post to talk about my experiences with pushing.

Isaiah still in water seconds after his birth

With Isaiah, our first born, I pushed with every contraction as soon as I found out I was 10 cms dilated.  I felt like I was pushing against a brick wall.  Now, I know that I should've waited until my body started pushing on its own.  Of course, my midwife wasn't intending on my forced pushing.  She told me to push if it felt good.  I was pushing because I thought that my baby would get into my arms faster if I did.  Well, that pushing lasted for 4 hours.  Isaiah was fine.  Our midwife kept a close watch on his heartrate, and when he started crowning, she kept a close eye on his skin coloring.  The only issue he had was that the plates in his skull were very overlapped, and even caused the roof of his mouth to not be smooth which effected his ability to latch on well.  Isaiah does not have hemophilia, and I am so glad because I think all that time in the birth canal may have caused problems if he had hemophilia.  As it was, the overlapping issue was resolved in a few days, and he was just fine.

Right after Ana's birth

Ana, our second, was another story!  I didn't mention in the previous paragraph that Isaiah was 9#8oz at birth!  Well, Ana was only 7#4oz.  That is a significant difference!  My midwife would not tell me when to push.  She said, I would let them know when it was time for me to push.  So, I waited.  It didn't take long at all until all of a sudden I was pushing with a contraction.  It just happened!  I wasn't trying to push or anything.  It was a natural response to my body's birthing process.  Within 6 minutes, she was born.  It was amazing!  Ana is a carrier of severe hemophilia A like I am, and did not have any issues at birth.

Elijah hours after delivery

Our third birth, Elijah was very different from Ana's birth.  If you read his story, you'll get a better idea.  One thing I did right was that I "tested" pushing with a few contractions, not a lot, just a very little start of a push.  It did not feel right.  So, I did not push.  I only started pushing when it felt right.  Which brings up the issue of epidurals.  Yes, they occasionally have their place, but they should be avoided for so many reasons.  Knowing when it feels right to push being one of those main reasons.  I learned in my first birth, that you can push too soon even after you're dilated to 10cms!  Ok, off the soapbox and back to Eli's birth.  When it did feel right to push, I quickly realized that this baby was BIG.  He wasn't coming out easy like Ana did, and I didn't want him to be in the birth canal as long as Isaiah was.  So, I P-U-S-H-E-D harder than I had ever pushed before!  When his head came out, my body rested as it always does.  It felt like forever!!  When I began pushing again and his shoulders and torso came out, I thought he was totally out, and went to scoop him into my arms.  "One more push! one more push!" my midwife and husband said.  I gave another little push, and that big 10#14oz bubba was in my arms!!  He was pink, and had no bruising at all.  If you read this blog, you know that Eli is our hemohiliac.  We didn't know until he was 4 months old that he had hemophilia.  I believe with all my heart that God's grace, the gentleness of his birth and my management of the pushing stage of his birth are credited with his safety.  It blows me away that our severe hemophiliac was the one that was almost 11#s at birth! 

Malakai just minutes after delivery

Malakai's birth was a breeze.  Like Ana, I didn't have to actually push at all.  My body just pushed him right out.  He was only 7#12oz.  He did have a meconium issue after his birth, and he was fine once they got it all suctioned out of him.  If you would like to see one of our births for yourself, we have a very non-graphic video of Malakai's birth on youtube.  His birth was the first one that we planned in the knowledge that our baby had a 50% chance of having hemophilia. 

All of our births have been water births.  I am a true believer in water birth.  I think it is a major cause of the gentleness of our births.  I have blogged about this before in:  Why I Love Water Birth:part 1 and Why I Love Water Birth: part 2.

The conclusions I draw from all my various pushing experiences are these:

1.  Don't push just because you are 10 cms.

2.  Focus on relaxing and staying "on top" of the intensity of your contractions.  If you are working with your body, your body will naturally start pushing on it's own, and you may not have to push at all.

3.  Only push when it feels right.  Sometimes, with very large babies, it may be necessary to push with your body.  I personally do not believe it is good for a hemophiliac to stay in the birth canal for a long time based on seeing what happened to Isaiah's head.  So, I do believe I did the right thing in pushing very hard with my body to get Eli out as soon as possible.

4.  Being as relaxed as possible, and in a position that allows gravity to help the process helps the pushing stage be much easier on mom and baby.

Thank you for your interest in Bubble Wrapped Birth.  As always, please don't just take my word for anything.  Do your own research.  Talk to your doctor or midwife.  This is what I believe and what I know works for me.  However, I do hope I have sparked some thoughts about the 2nd stage of labor that you may not have had before.  Thanks for reading!

Elijah



Eli and Silas

Elijah is 3 1/2 years old.  He will be 4 this December.  He is our third born child, and our only hemophiliac.  When we were expecting our fourth, Malakai, a big part of me was actually hoping he would have hemophilia too so that Eli would have a hemo buddy.  The strangest thing happened the moment we recieved the news that Malakai was unaffected.  I was sad.  I was so sad for Eli.  He was still my baby, not even being 2 years old yet.  Now, 2 years later, I am so thankful that Malakai does not have hemophilia.  As you probably know, we are due to have our fifth child, another boy, in 4 weeks.  Again, we will find out after his birth if he has hemophilia or not.  Elijah has been expressing that he wants Silas to have hemophilia like he does.  This breaks my heart!  Of course I would never choose a bleeding disorder for any of my children, but if Silas does have hemophilia, then that is part of who God made him to be.  I know it would be very special to Eli if Silas had hemophilia.  God has a special plan for each one of our children, and for Eli, having hemophilia is part of that plan.  Please pray for him.  I don't know what the next few weeks will reveal, but I want Elijah to be just as happy about Silas even if he does not have hemophilia.  I don't want his little heart to be broken if Silas also turns out to be unaffected.  Please please pray for him.  He is such a sweet, passionate, strong little guy.  His older sister, Ana is a carrier like I am, but it's just not the same.  Elijah is very much on my heart as Silas's birth gets nearer.  I love him so much.

"Oh, I don't care what we're having, just as long as he/she is healthy. . . "

It's funny to hear this statement now that I know our baby has a 50% chance of inheriting my mutated gene, and either having or carrying severe hemophilia a.  I don't say the above statement anymore.  Now, it's like this, "I do care what we're having because knowing we are having a boy or a girl greatly effects our birth plans.  Matt and I choose to find out the gender to best plan the safest most appropriate birth.  I want a healthy birth, but I want the baby exactly how God hade him/her whether that means 'healthy' or 'hemophiliac' or any other genetic disorder.   As far as wanting a girl or boy more. . . no.  I want the baby we have to have the safest birth possible.  I wouldn't change a thing about him/her."  Although, I know I am thinking too much into the traditional statement for which this post is named, this was on my heart, and BWB is the best place for me to share it.  Now, off I go to eat a healthy breakfast for my sweet little one.  <3

Hemophilia Awareness Month Daily Facts (posted thoughout March on my facebook profile page)

1. Hemophilia is an X chromosome genetic mutation. That's why girls are carriers. We have another X to make up for the affected X. (There are exceptions, but it's complicated) Boys don't. So, a mom that carries the gene (ie: me!) has a 50% chance of passing on the gene with every pregnancy. Dads who have hemophilia will never pass it on to their sons since their sons get their Y chromosome. However, all their daughters will be carriers since they get his X chromosome, and the affected X is the only one he has to offer.

2. It is very nice for a hemophilia mom to spend the evening at the salon (via birthday money) after an exhausting day at clinic with all the children. . . ;o)

3. The most common hemophilia gene mutation is "22 inversion". All the right information is there, but inverted in a section of the X chromosome. Therefore, the information that is there cannot communicate to get the job done (in this case: make factor 8!). This is the gene mutation in our family.


4.  When you have a child with hemophilia, everyone is affected. We are not just a family of 7 with 2 hemophiliac boys. Our family has hemophilia. We may not all have it in our bodies, but we have it in our family, and we deal with it everyday. We are all in this together! :o)

5. When my Dad was a young boy in the 1940s and 1950s, most hemophiliacs didn't make it through their teen years because the only treatment was whole blood transfusions. Their was no preventative treatments. The few that did survive, suffered major bodily harm from their bleeds, and their bodies are mangled, but they're probably some of the strongest men you'll ever meet. The most impacting thing for me is to hear these men speak of the different life their grandsons have now that they have factor. (Based on the film,"An Unexpected Life. Living with Hemophilia." Presented by the Alta Bates Summit HTC)

6. To make a clot, our bodies make a platelet plug, then a fibrin clot to hold it all together. Hemophiliacs make the platelet plug, but not the fibrin clot. With little cuts and scrapes, the platelet plug is sufficient, but sometimes not when they are in the mouth. Saliva breaks down the platelet plug, and makes a lot of trouble! So, there is a liquid medicine called "Amicar" that is available to help. Amicar prevents the saliva from breaking up the platelet plug. Sometimes, this is so effective, factor is not needed! Yay for Amicar!!! :o)

7. What are the leading causes of bleeds for a little hemophiliac during childbirth? forceps, vacuum, internal monitor

8. How does factor work during a joint bleed? Blood starts entering the joint capsule. It fills up with blood. The factor helps the bleeding stop. Digestive enzymes eat away the blood, but also eat away at the cartilage and bone. Once a joint has had a bleed, it will always be more susceptible to getting more bleeds.

9. One of the greatest threats to hemophiliacs today is an inhibitor. An inhibitor is when their body starts rejecting the factor it needs so badly. When this happens to a factor 8 deficient person (hemophilia A), they are treated with factor 7 until the inhibitor is resolved. Clotting factors work like dominoes, and factor 7 is a good plan b for factor 8 deficient hemophiliacs because it allows clotting to skip a step. It is not easy. You have to infuse the factor 7 a lot more often than factor 8. Sometimes it takes a very long time for an inhibitor to go away.

10. Did you know that the worst position to give birth is lying on your back*? This position reduces the size of the pelvis by up to 30%!! This is especially dangerous for babies with hemophilia since that would threaten the use of vacuum or forceps if the baby appeared to be "stuck", and those interventions are the leading cause of headbleeds for newborns with hemophilia. Get off your backs, ladies! ♥
*There are exceptions to this.  Sometimes, a woman's pelvis is shaped in a way that consistently causes back labor, and lying on her back is the only way to get the baby to turn.

11. Carriers of hemophilia have varying factor levels. Sometimes their factor level is well within the normal range. Sometimes it is the low end of normal. Sometimes it is so low they qualify as mild hemophiliacs. Rarely, it is low enough to qualify them as severe hemophiliacs. I thought this wasn't possible until I met a girl with severe hemophilia. The explanation for this is in how the chromosomes split and multiply soon after conception. Another interesting fact is that carriers typically have elevated factor levels while nursing or pregnant. Since I have been nursing and/or pregnant for the last 8 years, I don't know what my regular factor level is. When I was tested while nursing Eli and again while pregnant with Malakai, it was 90% (within normal range). When I was in my 3rd trimester with Silas, it was 190% (high end of normal).  Ana was tested and her level was 44%.  Normal factor level is anywhere within 40%-200%.  I can tell you that I used to bruise a lot more than I do now!

12. When a person is having a bleed it feels like burning, swelling, sharp pain, or bubbles/tingling. Other descriptions include: "when a joint swells up with blood it is like having cement in there causing you not to be able to move"

13. It is super fun to launch caps off of empty syringes after prophy. . . ;o)

14. When you have a child with hemophilia, you no longer take it for granted when you actually can just "kiss it and make it all better" with a non hemo child or a minor injury with a hemo child. ♥

15.  "Hemophilia is a genetic bleeding disorder that prevents the blood from clotting normally. The main symptom is uncontrolled, often spontaneous bleeding. Internal bleeding into the joints can result in pain, swelling, and, if left untreated, can cause permanent damage.'  -Jennifer Grizzard Smith

So much to be thankful for. . .

Today, I heard a story of a symptomatic carrier who nearly lost her life during the birth of her first child.  I also heard from a woman who's daughter has severe hemophilia and was badly bruised at birth.  My heart broke for these families, and I ached as I imagined what they went through at that time.

If you've read my birth stories on here, you know I've never gone through anything like that.  So many people deal with so much more than we do.  Something like that could happen to us at any time.  We need to thank God for his loving mercy in sparing us from such hardships as these.  We should never take anything for granted.  Every moment is a gift.

I also heard from some other moms today.  What stuck out to me about them was their ability to look back and have total confidence that they did what was best for their baby.  That has never meant more to me than it does now. 

In the past, I've met moms who were not given the best care, and their baby suffered much for it.  It is hard for those moms not to personalize the blame, even when they too were also a victim. 

These may be somewhat random thoughts.  I just want to pay tribute to this amazing community we've been a part of for almost 3 years now.  I learn so much from all of you.  I really believe that we are much stronger when we have each other.  Thank you so much for sharing your stories and insights.  I thank God for you!

This Blog is Dedicated to My Daughter

This blog is dedicated to my daughter, Ana, who is a carrier of severe hemophilia A, and my possible future granddaughters who will also carry the gene. I am passionate about birthing, and specifically safely birthing hemophiliacs. My hemophiliac son, Elijah was 10 lbs 14 oz at birth, born at home in a birthing pool with a midwife present. He did not have any bruising, and I did not have any tearing. He was diagnosed with severe hemophilia A at 4 months old because of 2 unexplainable hematomas along his waistline. It was pretty scary. I found out that I was a carrier just before his first birthday. A few months later, right before his port surgery, I was pregnant again. This was the first time I would plan a birth with the knowledge that I was a carrier of a severe bleeding disorder. Of course, I wanted to have another home waterbirth! After all, Elijah had an amazing birth, right?! I soon found out that it wouldn't be that easy this time. No licensed midwife could take me for a homebirth despite my birth history of 3 perfect waterbirths at home, one being a nearly 11 pound severe hemophiliac. My hemotologist even suggested that I schedule a c-section. I searched and searched the internet for information on hemophilia and childbirth. I found nothing on waterbirthing a hemophiliac, and I didn't find anything that convinced me that the normal natural birth process put a potential hemophiliac in danger for a bleed. In fact, all the bleeding problems I found were a result of using interventions during the birth. In the end, we had our fourth baby's birth in the hospital. This amazing hospital allowed us to bring our own birthing pool, and even made room for it by moving the bed to the hallway. We had a great midwife, and our baby boy had the most gentle birth yet! 2 hours later, we learned that he did not have hemophilia.

The purpose of this blog is to share stories and information to learn together about planning the safest birth possible as a hemophilia carrier, for our babies and ourselves. Wouldn't it make life easier if we could just keep them in bubble wrap?!!