"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 <----------

Tater (Ben): Liz and Bubba (James) Purvis's Story

I met Liz Purvis on facebook.  I was searching for hemophilia birth stories specifically ones where the baby suffered a bleed.  I just wept when Liz shared her story with me.  Since then, she has shared pictures of little Tater on BWB's facebook page.  This post is dedicated to Tater and his loving parents, Liz and Bubba.  The following is her written story and the captions to the pics are in her words.

~Our Story~

I would like to introduce myself. I’m Elizabeth and I’m married to James. We have a beautiful son named Benjamin. He has severe hemophilia A with inhibitors.. I’m a nurse (but I stay at home with Ben) and my husband is in the army. Here is our story.

After 6 days of my water being broke. 3 internal monitors placed.
Finally a csection due to failure to decend. 5 weeks early

subgaleal bleed from 3 internal
monitors being placed

We decided to get pregnant. Nothing ran in our families so we were expecting no complications. My pregnancy was wonderful. Then at 34 weeks my water broke. I was admitted to the hospital and 6 long days later Benjamin came in to the world at 35 weeks via c-section because he failed to descend. I kept asking what his apgar score was (a score that basically says how well the baby is after birth) they would not tell me. They put a hat on his head. Let me kiss him and my husband held him for a brief second. And they whisked him away. When I was in the recovery room they told me that he was in the nicu on oxygen. I finally made it to the floor and my husband said they would not let him see the baby. We called up there and they said to come pick up some paper work and supplies for breast milk. My husband came back and told me there was something wrong with Bens head. The next morning the doctor came to talk to us and told us that Ben had a subgaeal hematoma. That is a bleed in between the scalp and skull. It looked horrible. They had no idea what caused it. They needed our consent to give blood transfusions. They ran a clotting test called a Prothromin Time (PT) but every sample clotted before the lab could run the test. After a week they said we could take him home. We roomed in with him. They did a heal stick on him and he bleed thru a band aid paper towel house shoe and six blankets. He no longer could maintain his temperature. They took him back to the nicu and ran tests. The next morning they did a ct scan and found a subdural bleed. This is a bleed between the brain and skull. They wanted consents to start cryoparticiapate which is packed blood cells and give him a drug called Novo7. They were consulting with a neurosurgeon. They told us the baby would need brain surgery to evacuate the blood. We went to see him. We were waiting for the next step and all of a sudden they said it was time for the surgery. We had a priest come and baptize him. 

Right before the surgery.
Subdural bleed causing stroke and seizures.

3 internal monitors placed. They "screw"
into the scalp. And they "came out"

And he went down. The surgery took about 2 hours. When the surgeon removed the skull the hematoma expelled itself because of all the pressure. He also had some clots in his brain that they removed those clots caused him to have a stroke. They inserted a Picc line in his head. So they wouldn’t have to keep doing ivs in his hands. They kept him on a ventilator and in a medically induced coma. After a few days we were transferred to a large city where we immediately got a diagnosis of hemophilia a. His level was 16%. They started advate and weaned him off the ventilator. Ben did so well. He started eating on his own so they could remove the feeding tube. He held his own temperature. It was wonderful. Then his IV accesses stopped working, even the Picc line. We were then bombarded with people who wanted to put in a central line. I asked for a central line for days. We consented for one and they decided to put in a picc line at the other hospital. This whole time a hematologist only spoke to us to give us the diagnosis. NO other time. We kept asking. SO after a hematologist spoke to us and told us he had to have the broviac (central line) to go home. He did very well with that surgery.

Healing at surgical site

We were soon able to take him home. The only thing we knew is we had to give advate three times a week and they told us he would never get to be a normal boy. We had lots of questions that they would not answer. Like can he play baseball or ride a bike. Do we get extra advate in case he falls? You know stuff like that. They said our questions would be answered later on his life. I got tested and I am a carrier at 12%. And we retested Ben and his level was <1% so he is a severe. Lots have happened since all of this. He now has a port. He also has an inhibitor. That complicates the situation even more. I have met some awesome people thru all of this. He is doing really well. We attend Physical therapy and occupation therapy and many many more appointments.

Tater's scar 17 months later

The Last 4 1/2 Weeks. . .

Four and a half weeks ago, we found out that the baby we are expecting is a boy.  As you probably know, this was significant news for us since I am a carrier of severe hemophilia A.  I've been off facebook a lot ever since. This was first because of a virus that hit our family right after finding out our little one is a boy, and second because we have a lot going on right now, and I have a lot to mentally and emotionally process.  I want to take some time and talk about that.

When I first saw that second pink line appear, I knew I was having a girl.  Of course I was having a girl!  I was so emotional, and we already had 3 boys and 1 girl.  Also, planning a birth for a girl is much less stressful for us than planning a birth for a boy, and I just knew that this time, we'd get a break.  This summer, we are moving, Matt will be going back to school in the Fall to pursue a nursing degree, and work full time on top of that.  It is very exciting, but also pretty stressful.  I was thinking that at least the birth planning would be a breeze.  We are hoping to move to MI where we already have a great midwife.  A girl would mean planning a simple homebirth with a midwife I already know and love.  Even though I said, "Oh, yeah, we could be having another boy!", I didn't really believe it.  I knew I was having a girl.  Then, it was time for our ultrasound. . .

The technician was so friendly and happy with us about our expecting our 5th.  She couldn't see anything revealing for what seemed like so long!  She was busy measuring all kinds of things, and then. . .

"Well, you've seen that before!" she said.

It was NOT the cord!  We saw very clearly that we were having another boy!  Matt and I just laughed.  4 boys and 1 girl?!  Wow!!  I was already very much in love with this tiny little guy, and now I knew that he was a HE.  We even knew his name:  Silas Martin Reeves. 

Even though we were very happy, we were in shock.  A boy meant a lot more work.  Yes, he could have severe hemophilia, but that wasn't what was weighing so heavily on me.  I was counting on having a break this time with birth planning, and having a simple homebirth.  With all the things we are dealing with right now, this was not going to be one of them. . . BUT now I knew it was. 

2 days later, our family was hit by a horrible stomach virus.  Eli was first.  He had a fever, and since he has a port, that meant 48 hours in the hospital.  It hit us all, and it was bad.  It lasted 5 days for each person, and it took 2 weeks total for us all to be well.

After we were well, I started thinking about Silas's birth, and things started hitting me.  Once again, I don't know where we are going to be for this baby's birth, and now, I have to plan for a severe bleeding disorder!  I still am not convinced that there is any danger for a severe hemophiliac with a gentle vaginal delivery unless drugs or interventions are involved (with the exception of breech, placenta previa, etc).  My main concern for planning a birth for a boy has always been getting his cord blood tested.  If we didn't get his cord blood tested, we would have to take him in for a blood draw which is traumatic for a baby. 

Our 4th, Malakai, was our first hospital birth.  His birth was awesome, but there were some things we didn't like especially afterwards:  the lack of rest, all the strangers (drs and nurses) coming in to touch the baby, the fact that the hospital pretty much owns the baby until they discharge you both, the ridiculous hearing test, the required vitamin K (although they did allow us to use oral instead of a shot), having to be separated for a few minutes from the baby so they could help him start breathing at birth (ended up being meconium, and they did a great job; but at home, we would've been set up right at the pool), our children couldn't be there at all due to a flu epidemic at the time (not to mention the fact that there was a flu epidemic at the time, and we were there with our newborn!), and the heel prick.  Malakai didn't have hemophilia, and we had an amazing hospital experience to say the least.  All the issues I just listed are nothing compared to what I've heard other people complain about, but still. . . I am a homebirther at heart.

I do not think that homebirth is the right choice in every situation, and maybe it's not the right choice for Silas.  I don't know yet, but I can't plan his birth until I know where we are going to be.  Matt has applied for so many jobs in MI, but has no leads.  He has started applying here in NY as well in case there is nothing in MI.  Soon, he will probably expand his search to other states as well.  We really can't afford to be picky right now!  Our income will end in just a month or two.  I decided that right now, I will just focus on keeping myself and Silas healthy, and when I know where we will be,  I will start planning his birth.  Before then, it's just too overwhelming for me. 

Even with all the birth planning stress and the possibility of more hemophilia in our family, I am SO excited about our new little guy!  Silas is a sweetie.  I am 21 1/2 weeks along now.  I feel him moving around more and more everyday.  My heart is full of love for him!  I know that everything will all work out, and when he is safely in my arms, I will look back on these days and smile.  God has always taken care of us.  We have been in more stressful situations that this, and everything is going to be ok. 

Thank you for your patience right now, and all your love, support, and prayers.

We're having a boy!

I am now 17 weeks pregnant.  Yesterday, my husband and I went to our ultrasound appointment and found out that our baby is a boy!  So, that makes 4 boys and 1 girl now for our family.  We were shocked silly.  Yes, of course we weren't truly shocked, but we did laugh a lot!  Another boy?!!  So much for having a break with birth planning, right?!  No, we are very happy about our little guy.  He even has a name:  Silas Martin Reeves.  He is a sweetie, about 6 ounces, and quite a wiggle worm.  We absolutely love him!! 

So, now for planning Silas' bubble wrapped birth. . .

We are hoping to move to MI in a couple months.  By then, I will be about 6 months along.  I spoke to our midwife there, and she gave me the name of a CNM who works in a birthing center there.  I will speak to her today.  The big hospital connected to Children's Hospital of Michigan says they offer water birth with midwives as well.  This hospital also happens to be one of the best in the country for hemophilia.  I will definitely be looking into that! 

The problem with homebirth is getting the cord blood tested.  Our midwife can draw it, and Matt could run it to a hospital lab to be tested, but they can't accept it without a prescription.  We would have to find someone who would write a prescription for us, and a 24 hour lab that would accept it from my husband/midwife. 

What we are looking for in a birth is:

• a totally hands-off approach
• water birth
• cord blood testing
• gentle baby care afterwards (ZERO separation, no heel prick, no vit k injection, etc.)

Obviously, if we could work out the cord blood testing, homebirth would be great.  If not, we have to find the most gentle hospital/birth center situation.  Getting the cord blood tested is very important because if we don't get it done, then we have to take our newborn in for a blood draw.  That is miserable torture for a baby, as any hemo parent knows! 

It will all work out.  I will not fear.  Although, I know I will have my moments. 

~Silas, we will make the safest birth for you, sweetie.  We love you so much!~

Our Journey

I was an avid natural birth advocate way before I knew what the word hemophilia meant.  After our third child was diagnosed with severe hemophilia and I found out I was a carrier, I began to ask people a lot of questions.  I asked other hemo moms, doctors, nurses, midwives, anyone!!  I wanted to know if my beautiful home birth days were over, and I wanted to know the real risks posed to baby hemophiliacs at birth.  It was then that my Bubble Wrapped Birth journey began. 

I have heard many stories, read the studies, looked at medical reports, and read our recommendations published in Hemaware magazine.  I have never once read a birth story where a baby had a gentle birth with no drugs or interventions of any kind, and ended up with a bleed.  In fact, all the birth bleed stories I've read have been births with drugs or interventions such as vacuum or forceps. 

I am committed to planning safe deliveries for each of my children.  I've learned a lot from other hemo families, midwives, and my own experience.  My husband and I have learned what works best for us and allows us to have the most gentle birth as possible.  We use water birth.  It allows me to fully relax, move effortlessly, and be in the greatest positions that open my pelvis to maximum size.  There are some situations that we have decided would mean the safest delivery would be a c-section.  These include placenta previa and a breech boy (maybe girl, not decided yet). 

The bottom line is this.  We believe that a gentle vaginal birth is most beneficial to our children unless one of the above complications become evident.  In this Bubble Wrapped Birth journey, I may come across other reasons for scheduling a c-section.  My concern is what is best for my babies.  Period.

As far as home birth, I birth at home when I believe the hospital situation threatens dangerous interventions and does not support our birth plan.  One hard thing we've come across is how to get the cord blood tested from a home birth.  It was for this reason our fourth child was born in the hospital. 

His birth was perfect, and just as gentle as a home birth.  After he was born, he had a meconium issue, and needed suction and breaths.  That was a first, and not fun.  He was ok, and I thought the staff did a fine job taking care of the situation.  If we had been home, we would've been set up right at the side of the pool.  He would've been able to be suctioned, and get breaths on a flat warm surface without cutting the cord or leaving me.  The baby care at the hospital was also something new for us.  Home is much gentler on the baby, and we are in full control of what happens with our baby.  In a hospital, we dealt with required procedures, sometimes dangerous for a baby with a bleeding disorder (ie:  rough personnel and the heel prick).  We were there for one reason, and that was the cord blood testing.  He did not have hemophilia.

Now, we are 12 weeks along with baby #5.  We will find out around Easter time if baby is a boy or a girl.  Plan A is a home birth with cord blood testing and a trained professional with emergency equipment.  Plan B is a gentle water birth in a hospital with a midwife where our birth plan is respected and we can get the cord blood tested for factor 8 level.  We will continue to grow and learn, and we will never compromise our baby's safety.  If we are having a girl, we will probably plan a home birth. 

Bubble Wrapped Birth is a passion of my heart.  Thank you for joining me on this amazing and precious journey!

Sorry for the L-O-N-G absence!! I'm back!

Since last May, I have started a BWB facebook page.  That seems to be the best way to contact people, but I want to get back to writing!  I really don't get too much feedback on my page, but I hope some of the topics make some people think.  I have gotten a few birth stories.  One thing that continues to dominate my thinking is the fact that bleeds are caused by interventions!!  My husband and I want to have more children.  We did have an awesome birth with Malakai at the hospital, but the newborn care protocols are not very hemophilia safe.  For example:  if he'd had hemophilia, the heel prick would've probably caused a bleed.  We were able to get oral vitamin K, though.  That was very good since they wouldn't let us refuse it.  If we could be guaranteed that our baby would not be handled roughly or be poked, I would definitely have another hospital water birth, and consider that our best choice.  Until I can have that guaranteed, I still have my doubts.  #5 is not on his/her way yet, but if we get any exiting news, you are welcome to join us in planning for another bubble wrapped birth!  ;o)