Home Birth, Midwives, and The Law

Silas in our herb bath still attached to his placenta (in a bowl next to him)

When you birth at home (assuming you have a great midwife), the focus is what is in the best interest of you and the baby, no strings attached.  At a hospital, even if you have excellent care, there are often hospital protocols and impatient medical personnel that you must choose to appease or fight.  I've had a great hospital birth, but even so, my midwife had to deal with a bunch of junk in the hallway to fight for my desires instead of just focusing on me and the baby.  There were things that happened to Malakai that we did not want, but had to because the hospital said so:  eye goop, vitamin k, ridiculous hearing test, not going home when we wanted to, etc.  At the hospital, the baby belongs to the hospital.  At home, we can just be a family.  Having a homebirth is not about having a fun or amazing birth experience for the mom.  It is a choice we make because we believe that is where our baby can have the safest most gentle birth without being cumbered about with much hospital protocols.  Yes, complications can arise, but they don't happen as much at home.  Unnecessary interventions (often because of hospital protocols or impatient medical personnel) CAUSE complications that require more interventions.  The most common are inductions, and timing labor and delivery to the extent that they do.  There are so many more, but most women don't even know they are wrong because they've never been taught otherwise.

Malakai on the scale after his pretty amazing hospital birth.
It makes me sad that all his beautiful vernix is gone here.
He was covered with it when he was born!

Certified professional midwives in states such as Indiana, practice "underground".  They must if they are going to help women who are having homebirths.  They can be extensively trained and certified, but the state simply does not allow them to obtain a license.  This legal situation is wrong, and those who act against it do so because they believe they are doing what is right in spite of the law.  This is much like how many people would respond to an anti-gun law.  I can tell you without a doubt that there would be countless people who would refuse to bend to that law and would not allow the government to disarm them.  Another example would be if it became illegal to carry a Bible or meet as a church.  Christians would then have to make a choice to obey the law or continue to follow their beliefs in spite of it.

In the case of Carol Velasquez, the deputy prosecutor claims that the issue is with illegally administering prescription drugs.  Those are the charges against Carol.  If Carol was carrying the drugs she is accused of carrying, she is in good company.  It would be very hard to find a midwife who doesn't carry Pitocin (for example). These midwives are simply arming themselves for any possible complication that may arise and the natural remedies are found to be insufficient.  Homebirth midwives should have the legal safety to care for their clients the best they can, but that is not the case at this time.  So, they give their clients the very best care while putting themselves on the line.

What needs to happen is that people need to speak up on the issue of homebirth freedom.  Midwives need to have the freedom to provide optimal care without the threat of the nightmare Carol Velasquez is going through right now.

Honestly, my husband put it in much better words than I did:

"Here is the thing, it is not a simple black and white issue. Is it technically illegal for a midwife to administer drugs such as Pitocin? I would have to answer yes. However, in order for midwives to be able to give excellent care to their clients and avoid certain complications they NEED to be able to use these drugs. The real problem is that it SHOULD be legal for CPMs to be able to use these drugs. By not allowing them to use them we are forcing midwives to either choose to compromise their clients care by forcing them to wait until they get to the hospital to receive treatment which in some cases may be too late when it could have been resolved easily at home by the midwife or take the risk because they are more concerned about the welfare of the baby and mother over the governing legislative body. Most midwives will choose the latter. It really is no different than a missionary going into another country where Christianity is outlawed, and under the pretense of being an English teacher, using that as a way to get into the country to teach them about Jesus. As Christians, we know it is TECHNICALLY illegal for them to teach Jesus and carry/distribute Bibles, but yet we encourage them, support them, pray for them, and fight for them if they get caught, because we believe it is the right thing regardless of what a governing body has declared. The same principle is true in this situation. The problem lies in the legislation, and I think some serious changes need to made at that level so midwives are not forced to make the sacrifices they do for the good of their clients."

 ~Matt Reeves

Support Carol Velasquez CPM!

BWB family, I am posting this link hoping that some of you would be able to join me to support Carol Velasquez. Carol is a certified professional midwife who has over 20 years experience providing optimal care for women, babies, and families. She is a dear friend to me and my family. ~Sarah

PLEASE READ:

"On March 28th, 2013 Carol Velasquez, CPM was indicted by a grand jury for practicing midwifery during her time in Indianapolis. Carol is a Certified Professional Midwife with over 20 years experience attending births. The care that Carol provided her clients was unparalleled by the Obstetric community and hospitals in Indiana. The women she attended received prenatal care according to the same schedule and yet she spent an average of 700% more time with us! This was acheived by scheduling 2 hour long appointments (as opposed to the 15 minutes OB/GYN's allot for patients.) She provided women with detailed nutritional counseling, recommended supplements according to the individual needs of the mother, and practical as well as emotional support to women facing difficult circumstances (myself included). Because the State of Indiana refuses to license CPM's Carol put her freedom on the line for each of the families she helped. Let's show our support for this brave woman on Tuesday morning as she surrenders herself to the court!"

*I am going to try my best to be there. I may have all my children with me. If you are in or near Indianapolis and want to help, please meet me at the courthouse on Tuesday morning (4/2/13)! If you can't be there, please share this event in as many homebirth friendly circles as you can, and please please pray. ~Sarah

CLICK HERE TO VIEW THE EVENT ON FACEBOOK

Thank you all so much for reading this blog.  This is an unusual post calling you to action, but I wouldn't ask you if it wasn't important.

-----> PLEASE SEE UPDATED POST HERE!

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.

Jeff Johnson, "a totally 'normal' hemo" shares his heart on how our feelings can affect our children:

Jeff and his wife, Stephanie

"I'd like to approach a subject here that's been present in our community for quite some time and unfortunately isn't always dealt with as openly and honestly as it could be. I'll warn everyone now that this is challenging, both of and for, parents. Not in a negative way but in a healthy, self examining way. Still, one should probably not proceed unless one is prepared for reflection, self examination and even, perhaps, the rejection of deeply held beliefs and feelings.

"The subject I'd like to discuss is the attitude that having hemophilia makes one less than normal and warrants feelings of guilt or regret in a parent or should be viewed as "bad news" and cause for mourning or distress. Now, I'm pragmatic enough to admit that yes, hemophilia is a whole different level of lame and I'm not demeaning my own condition. Bleeds suck, especially when they prevent an activity or life choice from playing out as we would have preferred. And it is expensive, of course, and time consuming. Yes, it has numerous challenges. But at the same time it is important to maintain perspective. There are countless conditions worse than hemophilia and in the grand scheme of things being born a hemo is far better than being born with MS or cancer or sickle cell anemia or so on. While a challenge, hemophilia isn't any longer a death sentence or even condemnation to a life that is less than normal. Our factor today is amazing, as is our care. Compared to previous generations and the trials they experienced, today hemophilia is barely even a disorder, which is why I often joke that "hemophilia is the new asthma!" While it may seem, to a clotter, that we hemos are afflicted with this terrible curse and will never experience the life which others would have wished for us, the reality, despite even the fears of a mother, is that there is absolutely no reason to believe that a hemo's life, especially today, will be any less full or rich or adventurous or rewarding than the life of our fully clotting peers. This isn't romanticizing either. Hemophilia has in many ways become an affliction of the soul and mind just as much, if not more than, of the body, and it's important that we treat it in those regions as diligently and bravely as we do the body.

"Which brings me to the part where I am going to challenge parents. When a parent (or grandparent, uncle, aunt, guardian, etc.) makes a statement that they feel guilty or regret that their child has hemophilia, what they are really saying is that they feel bad because their hemo is less than they could have been. Argue the point if you like, but tracing back from these statements, which I see often, that is the only logical end point. If one feels guilty for the condition of their child, then one sees reason to feel guilty, which means one sees in their child a condition in which that child is diminished or held back from being the something more they would be were that condition not present, which means that they see their child as being less than they could be. As a hemo, I must admit, that when I see someone expressing feelings of guilt because they had a hemo, or a refusal to have children because they're a carrier, or sharing the "bad news" that someone had a hemo, I feel demeaned and somewhat offended, as the greater idea those statements convey is that we hemos are less than we could be, less than our parents hoped for, less than our siblings or peers, less desirable. Less. This is simply not the case. As I discussed earlier, we hemos are equally capable today as any clotter. With modern treatment there is simply no challenge, activity or experience partaken by clotters which it would be impossible for a hemo to participate in. We are active, we are strong and yes, we even play football and hockey now. Yes, that really happens. But to get back to my main point, it is more attitude that restrains us today than hemophilia. We face far more challenges in overcoming the perception that hemophiliacs are fragile creatures at risk of greater harm than our clotting peers than we do of actually being held back by our condition itself, and this perception finds its home in the fears and guilt of parents and guardians.

"I will break here and state that yes, being a parent is incredibly difficult and the fears that a parent faces are sometimes insurmountable. We all know this, whether we are parents ourselves or not. At no point do I intend to convey that parents don't have a tough, demanding job and in no way am I demeaning a parent's emotions, fears or feelings. They are all reasonable and understandable. What I am hoping for, however, is to challenge some parents to engage in genuine self examination and to really confront how their emotions, fears and feelings affect the hemos they are experiencing those feelings for. To delve into themselves and ask themselves questions which many parents eschew, such as "Are these feelings beneficial? Is the way I feel good for my child? Even though I feel this deeply, is it really best for my child or is it creating an attitude that is detrimental to my child?" These are difficult questions, yes, but they are good ones to challenge one's self with. Quite often in my experience in the hemophilia world I have been confronted with parents who don't take this step and instead express their fear/guilt/regret/what-have-you and then stop there and wrap themselves in the mantle of parenthood, stating that "As a parent I am allowed to feel however I want!" Well, yes, we all are. And that's the catch. As a parent one is absolutely entitled to feel however one does, but parents are not released from the consequences of their feelings and the affects which they have on others, just as a pebble cannot be expected to be dropped into a pond without causing ripples to emanate and flow away from it. One's feelings of guilt for having a hemo may feel entirely legitimate to them, but in their child they may cause feelings of inadequacy. While a parent is mourning that their child has hemophilia they may be subconsciously communicating to said child that they are not as special and capable as they could have been born. The ramifications of a parent's attitude, even if not explicitly stated or expressed, are profound. I've seen, too many times, proof of this at summer camp. I've attended hemophilia camps since the mid eighties as a kid myself, and have worked as staff since the nineties. Every year, without fail, I observe at least one hemo who comes into camp meek and apprehensive. They're unsure of their potential and afraid to fully engage. As the week progresses and we work with them to instill courage and empowerment, they come alive, and by the end of camp they are running, jumping, climbing rock walls and living with the gleeful abandon that they deserve. It's glorious. But then, on the last day, they retreat back into themselves, especially when their parents show up. Now that Mom is around again it's time to go back to being a hemo, a defective kid who isn't "normal." It breaks my heart every time because it doesn't have to be. Many parents don't even realize that they are doing this, which is sad as well. They think they've contained their guilt, their fears and their regret and that their child is completely unaware, but that's merely an illusion. Their child is very much aware of how Mom and Dad feel and so, out of his love for them, he plays along. "Mom feels guilty that I have hemophilia so I'll be good and not do anything 'dangerous.'" "I don't want to make them feel worse so I won't try out for soccer." And so on and so forth. They don't live up to their potential and their parents never see what their child is really capable of. Hemophilia hasn't held them back; the attitude and perception that it is less than normal and cause for guilt has. I see it all the time.

"So again, I challenge parents to really look deeply into themselves and examine their emotions and feelings. Ask yourselves if how you feel is really, legitimately warranted and if it is the best way to feel for your child. Examine why you feel a certain way and whether or not it is based on fear or reality. Reject the comforting but unhelpful sanctuary of "I'm a parent and can feel however I like" and instead proceed with the attitude of "Even how I feel inside affects him so what is the best way to look at life? And him?" Of course these kinds of exercises are difficult, but so is learning to self infuse, which your little hemo will have to do regardless. Consider this "prophy for the soul." I promise you, it's for the best, for everyone. Hemos who grow up in homes where the attitude is "You just have hemophilia, not 'made out of tissue paper syndrome' so get outside and play" flourish.

"In closing I'll pose the question, "What is normal anyway?" Not having hemophilia is normal? I call shenanigans. From my perspective, it's clotters who are abnormal. They freak out at the thought of getting stuck with a needle, a bruise gives them panic attacks, they think a limp is a sign that it's time to see a doctor, they usually can't wrap an ankle to save their lives. Poor clotters... So far from normal... See what I'm getting at? There is no normal, so there is no model of normalcy to hold a child up against. We all have conditions. We are all imperfect, and in this lies our perfection. So from a totally "normal" hemo who hopes to one day live free of the perception that I am less, please challenge yourselves to no longer see us as less. See us as more. See us as normal.

Or I'll stick you."

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.

"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.

A Simple Guide to "Bubble Wrapping" Your Birth:

We put bubble wrap around things that are special to us:  special Christmas decorations, fine china, crystal, figurines, and other treasures.  There is nothing more special than finding out you are carrying a new life inside your body.  You don't want anything to harm your most precious treasure of all: your baby.  "Bubble Wrapped Birth" means a birth planned with care to keep your baby safe through the birth process. 

But, how? 
Here are six key points to planning your own bubble wrapped birth:

1.  Be healthy. Making healthy choices and having a healthy diet is the foundation for a safe birth. This link is a good place to start.

2.  Know your body.  Understand your unique health facts:  birth history, factor level, bleeding history, etc.

3.  Know your baby.  Study fetal development.  Understand the impact that prenatal health, gestational weeks, and birth choices make on your baby.

4.  Understand birth.  Research the natural birth process, what things hinder the process, how to work with your body, how to safely deal with labor pains, and when interventions are truly necessary. Click here for an excellent resource to get you started!!

5.  Know your options in your area.  Is there a birth center available to you?  What options are offered at your local hospital:  midwives, water birth, doulas, competent NICU, etc.?  Are there good home birth options with competent care and medical backup such as support from your HTC with cord blood testing, etc.?  What policies will you have to work with at each birthing location?

6.  If you are unsatisfied with the options in your area, work to change them!!

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

"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. 

Our Fifth Birth - Silas

17 weeks

31 weeks

After a very busy pregnancy with my husband's career change, a major move, many blog and facebook posts, and much prayer, the time finally came for Silas to come out and join us. . .

On Wednesday, September 21st, I started to feel like "I really want to have this baby soon!!!"  My sporadic contractions had been picking up in frequency and intensity that week.  The day before (20th), I had really begun nesting, and on the 21st I was insanely energetic.  There was crazy hyper nesting going on, and the house was looking great!!  I hit 39 weeks on the 22nd.  That weekend, I started feeling like "This baby is never going to come!  I will be pregnant forever!!"  That is significant because I always feel that way a couple of days before the baby is born. 

Grandma "Kat" helping with bedtime

Isaiah beginning to record
my contractions

Sunday night, the 25th, my contractions were getting stronger, thanks to some alone time with my husband and nursing our toddler.  In the morning, I had some bloody show and more mucus plug, but my contractions were weaker.  I was really discouraged!  I told my husband, "I feel like a car in the winter time that you keep trying to start again and again, but the engine just won't turn over!"  He sweetly and firmly replied, "No, that is not a good comparison.  When a car does that, there is something wrong with the car.  There is nothing wrong with you.  Your body is doing exactly what it's supposed to do.  Don't be discouraged.  You are making progress, and getting ready to have this baby."  Well, that put me right at ease.  I love him.

Birth pool filling up next to Isaiah's bed

Matt went off to work that day ready to come home in an instant if needed.  I kept him updated throughout the day.  When we were on the porch waving to him, our oldest, Isaiah (7yrs) said, "Don't worry, Mom.  If Silas comes, I'm here."  My contractions started getting stronger that afternoon, but were 20 minutes apart.  As the day went on, they got more frequent.  Isaiah started tracking them on a paper.  That evening, I called my mother in law, and asked if she could help me with bedtime.  She came over and was a big help.  My contractions were between 5 and 8 minutes apart.  I was putting sheets on a couple of the kids beds while my mother in law fed them and got them ready for bed including reading books to them.  I would've gone crazy if she hadn't helped me through that evening!

Laboring in my bed with my phone
(I was keeping my fb crowd updated)

Matt came home as quickly as he could after he got off at 10:00, and our midwife arrived soon after that. Or maybe she got there first. . . I can't remember.  She brought her 2 children with her, and right away, her kids and ours were piled on Isaiah's bed playing with Isaiah's game boy!  She got her kids to bed quickly, and Matt got ours back to bed.  Then, I tried to get some sleep. 

Malakai came in to check on me

My contractions were getting more intense.  We decided to at least fill the pool halfway, but I was getting such strong contractions, I ended up telling him to just fill it up all the way because I wanted to get in!  However, when I got in the pool, my contractions slowed down a lot.  We called our doula at 11:30.  She got there when I was lying in Isaiah's bed next to the pool.  I was so tired!
Back in my own bed, I tried to sleep, but lying on my side brought on great contractions.  I just focused on relaxing, knowing that those more difficult ones were the ones that were helping Silas get to my arms faster.  When they were extra hard and I just wanted to survive through it, I would totally surrender my body to the contraction and remove my mind and emotions from the pain.  I would think about my baby, and how the contraction was opening my body for him.  It really helped.

Back in the pool

Whenever I got back into the pool, my contractions slowed down.  This was a very weird labor for me.  My midwife and Matt made sure I was eating and drinking well throughout my labor which helped my energy and endurance level a lot.  My midwife gave me some Valerian herb in tincture form to help me rest.  I did rest, and continued to contract all night.  Our doula had to leave to get back to her baby at home around 8:00am.  She said to call her if things picked up.

Silas, right when I brought
him out of the water

One of the times that I got back in the pool during the early morning hours, Eli walked in the room.  His first words were, "See, told ya I would wake up myself!"  I had told him that someone would wake him up if Silas was coming during the night.  He was very excited that the pool was filled.  Then he said, "So. . . is your belly gonna crack open like an egg?"  I proceeded to give him a basic understanding of where babies come from and the special way that God made mommies to birth them.  He was satisfied enough.  We chatted for a while.  It was so nice to have one of our children in the room.  It made me feel so comfortable, and the atmosphere felt more normal.

Instant Joy after lots of hard work!

While Indian style on the bed, my contractions came every 5 minutes and their severity was very good.  Then, during one contraction around 11:30, I felt Silas move down.  It was pretty cool!  When my legs got tired of that position, I tried the birthing ball.  While I was lunging on the birthing ball, Matt said, "I feel like it's Christmas, and we're trying to squeeze Santa down the chimney." It was really funny, and we both laughed!

After the birth ball, I got down on the floor.  There was a short time (just a few minutes) that I was alone.  I tried to sing "Edelweiss" to Silas, rocking and rubbing my belly.  I couldn't.  I was so overcome with emotion on the lines, "bloom and grow" and "you look happy to meet me", I could not sing!

I was eating and drinking during this whole time. Silas's heart rate was very good.  My midwife suggested that I start walking around.  That was very effective.  My contractions' intensity increased noticeably.  They were more difficult to get through, but I stayed on top of them.  My midwife told me to get in the pool, walk around in the water, then squat down for contractions to ease the pain.  That plan worked very well, and that time ended up being the sweetest and most personal part of my labor.

Our younger 4. Isaiah was busy playing with the midwife's son!
He did peek in from the hallway though.

Matt came in the room with me.  We closed the door for privacy.  Sunlight was pouring in the windows, and our birth play list was playing softly in the background.  I felt so silly walking around in the pool with Matt sitting there watching.  So, I asked him if he'd like to walk with me.  He held my hand, and walked with me around the pool (he was outside).  When I felt a contraction coming, I would squat down, and relax.  Then, I got back up to walk.  Well, our walk became a dance, like a tango or something silly like that.  We laughed so much!  Matt said, "OK, we are not supposed to be having this much fun during a birth!!"  It was such a sweet, funny, and romantic time between the two of us.  

When my contractions were well established, still 5 minutes apart, I stayed down in the water.  Apparently, some were 3 minutes apart because that is what is written in my Labor Record for 1:15pm.

At 1:28, I checked myself, and felt my sweet baby's head!  He was 2 knuckles in, and I felt the molding of his head.

Beautiful pic of Silas and Daddy
(Stacey Rainer Photography)

Gradually, my contractions changed to pushing contractions.  It was NOT easy like Malakai's birth because he had never tucked his chin! So, I did push with my body.

I had asked my midwife to call the children in when I started pushing.  When the children were coming, I pushed his head out.  His bag of waters were still intact until his head came out!  Remember, in Malakai's birth, when I softly stated, "Yes, the head is out." Not so this time!  I exclaimed with exhaustion "HIS HEAD'S OUT!"  After that, there was a brief rest period before the next contraction.  I was caressing his little head.  My midwife came around behind me.  She said his color was good, and said she would check for a cord.  "There is a cord." I told her.  It was loosely around his neck once.  Then, at 1:50pm while Chris Tomlin's "Indescribable" was playing on Matt's iTouch, Silas slowly came out with the next contraction.  I was carefully getting him unwrapped from the cord.  Matt told me to bring him up.  So, I started moving faster.  My midwife said, "Wait, let's get it off his shoulder."  I did with her help, and brought him up.  My midwife stripped Malakai's clothes off and put him right in the pool.  He loved Silas immensely right from the start.  It was so sweet!  Eli told her, "I do not want to get in the pool!"

After our happy relaxed time rejoicing over our newborn and phone calls to our moms and our doula (My labor was so weird that we never knew when to call her until it was too late!), it was time to think about that cord blood.  I carefully got out of the pool, and sat on the birth stool.  Almost immediately, Silas's placenta was born into the bowl below me.  Then, our midwife drew the cord blood.  Silas was still attached to his placenta.  So, she wrapped it in a chuck pad, and put it in a plastic bag.  We chose to do physiological cord clamping for Silas.  We researched the risks and benefits, and decided to let him receive all of his own precious blood and stem cells.  It would take a whole separate post to express all the protection and benefits that newborns receive when they are allowed to get all their own blood and stem cells!  Our midwife was able to get plenty of blood without cutting the cord.  His cord was not clamped or cut for 4 hours.  We did learn that the physiological cord clamping doesn't work the same with a hemophiliac.  First, his cord was cut very long, and didn't need any clamping at all.  However, later that night, when we cut it shorter with no clamps, it did seep a bit, and we had to clamp it.  Next time, we will wait a full 24 hours before cutting the cord short.  With help, I walked to my bed to lie down with Silas.  Matt was soon out the door to run the cord blood to the hospital.

When Matt got back, it was time for our herb bath.  That's always a nice time, and we got lots of beautiful pictures of Silas in the bath.  I think I might make a whole post full of herb bath pics!

A few hours later, we got the call from our hematologist about the blood test results, and learned that Silas does have hemophilia.  I will write more about that later since this post is already so long!

Silas taught me that just because a baby is small, it doesn't mean that the birth is easy.  Silas was only 6# at birth, and his birth was one of my most intense (and I've had a 10#14oz baby!).  I really had to work for him!!  No, size is not the issue, it's all about position.  Silas did not tuck his chin probably because his cord was right there and it was uncomfortable for him.  He came out in an anterior brow position.  However, it was another amazing and beautiful birth, and it was so nice to be back home and share the experience with our children.  Welcome, Silas Martin Reeves!!