Showing posts with label hematologist. Show all posts
Showing posts with label hematologist. Show all posts

Saturday, July 21, 2012

Silas and His Placenta (September 27, 2011)

Matt took these beautiful pictures after he got home from running the cord blood to the lab.  We were in the herb bath, and it was at least 2 or 3 hours after the birth.  

Our hematologist was worried that he may have received too much blood.  So, the next morning we took him in for a head ultrasound.  He slept through it and the results were normal.  One great thing about physiological cord clamping as opposed to delayed cord clamping is that the baby doesn't just receive more blood, he/she receives the perfect amount of blood.  See, the cord gives and takes.  The process is designed to regulate the perfect amount of blood for the baby.  So, the baby may actually get a little less blood if you wait longer.  It doesn't clamp off until the baby has all the blood he/she was intended to have, not any more and not any less.  

We did learn some things about physiological cord clamping with a hemophiliac.  After the cord is emptied of blood, the cord naturally clamps itself with the Wharton's Jelly that is produced in the cord.  This usually happens within hours of birth.  We waited until that evening to cut the cord (about 8 hours).  After a while, it ended up filling with blood again and oozing.  So, we had to clamp it off.  Next time, we will wait a full 24 hours before cutting the cord.  This will make sure the cord is well sealed within itself.  

Silas is so healthy and strong and smart.  He is almost 10 months now.  I would definitely do this again.  I love my baby getting the perfect amount of blood meant for them.  

I hope you enjoy the pictures and share them.  I wanted to get these out there because so many people don't get to see the beauty of a baby still connected to their original life support hours after their birth. 










Friday, March 9, 2012

"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 <----------

Tuesday, October 25, 2011

"Why Home Birth?" by Stacey Rainer

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

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

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

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

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

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

Monday, October 24, 2011

"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. 


Sunday, August 14, 2011

33 1/2 weeks and planning a HOME birth!! :o)

The last time I wrote, I was unsure where we were going to be, or what kind of birth we would be planning for Silas.  We are now in IL.  We have hired a licensed midwife from out of state to attend our home birth.  We had this midwife for our firstborn, and love her very much.  She gives excellent care, and is extremely competent in handling emergency situations.  We have also hired a doula to attend.  This doula has nursing training and is a hemophilia mom herself.  We live 2 minutes away from the hospital, and we have a new hemotologist who has accepted and run cord blood from home births in the near past.  We are officially meeting with him in a few days, and do not anticipate an issue. 

I am so excited about this birth!!  Matt and I will be ordering the birthing pool and supplies this week.  My mom and Grandma plan on coming down for the birth.  All 4 of our children will be able to be there too.  Although, Isaiah, our oldest (7yrs), plans on playing video games through the whole thing!  ;o)  I love that we are receiving such excellent care.  I love that another hemophilia mom will be there too, and that she is a nurse.  I love that we can still get his cord blood tested from a home birth, and I love that we are so close to the hospital in case of any emergency. 

God has worked this out incredibly.  We are looking forward to another beautiful birth.  I want to live post/blog Silas's birth when the time comes if I can work it out.  All the pics posted will be "G" rated as I am not comfortable posting graphic pics of myself on the internet.  I would love for you all to be "with me" through our special day!

Friday, May 28, 2010

My Bubble Wrapped Birth

If I were putting together a birth plan for another baby, I would look at my options and decide where my baby would be the safest.  That is simple enough, but what is "safest" to me?  I choose water birth with a midwife nearby who is trained in newborn and adult emergency response.  I would choose to be in a place that does not interfere with my natural birth process.   If you have read my birth stories, you know that I have had 3 home water births, and one hospital water birth.  I prefer home because there are no hospital protocols to deal with.  Some could even cause a bleed.  I want to have the cord blood tested immediately after birth as opposed to getting it drawn a few days later.  That's rough.  My motivation is my baby's safety.  So, I would draw from my experience, assess my options, and choose the birth plan that keeps my baby the safest.  The purpose of this blog is to gather and discuss information that would help make this careful decision.

I consider water birth a huge asset to hemophilia carrier moms who want to avoid a c-section. Most hemophilia "experts" recommend that we have scheduled c-sections. Yet, I have searched and searched on this subject and cannot find any proof that a normal, calm, un-intervened birth has ever caused a bleed in a severe hemophiliac. All bleeds I have read about are caused by interventions during labor and delivery. Water birth has so many benefits to mom and baby, but the most important is that the mother is more comfortable. This relaxes her muscles. The warm water makes her stretch much better. The buoyancy of the water makes it much easier to move anywhere at will weightlessly. You naturally ease your baby out. These facts make the birth more gentle on the baby, and isn't that always the goal with a hemophiliac?

Wednesday, May 26, 2010

Our Fourth Birth - Malakai (part 1 - pregnancy and planning)

I didn't realize how emotional it would be to revisit my pregnancy with Malakai.  I've shared my birth story with so many, but his story begins a few months before he was created. . .

One month before Elijah was a year old, I got the news that I was indeed a carrier of severe hemophilia A.  (For those who aren't as familiar with hemophilia:  It is possible that a hemophiliac is the result of a spontaneous mutation, and did not inherit the gene from a parent.)  That was November 2008.  In March 2009, we found out that we were expecting #4.  Within the next month or two after that, my husband learned that he was losing a huge part of his job that would make it impossible for us to stay in CA.  This was a very personal thing, and not just a business downsize.  Also, Elijah was one week from his port surgery.  I was under extreme stress, and had to choose where my energy would be spent.  That was not a hard choice.  I had to take care of my family.  My husband needed a lot of support, I was growing a baby that needed me, and I was gearing up to hand off my older baby to surgeons.  There was no room for anything else.  But, still, it didn't make all the other pressure go away.  On top of all that, I had to start planning my upcoming birth.  We got an ultrasound to determine the sex of the baby.  It was a boy!  I started doing extensive research on hemophilia and childbirth, and was not satisfied with what I found. I'll get into that in another post. 

Several facts were in the mix: 

1. Our baby had a 50% chance of having severe hemophilia. 

2. I had to plan my birth with wisdom in the new knowledge that I may have passed on this gene. 

3. I could not base my decision on the success of Elijah's birth, although that did play a part in the decision.  All hemophiliacs are not the same, and have different bleeding patterns. 

4. Until my third trimester, I did not have any idea where we would be for the birth. 

5. We needed to have his blood tested right after his birth.


6. Our son's hematologist recommended that I schedule a c-section.  Then, when she could see that I was not welcoming that idea, she recommended a plan B:  Have my birth as natural as possible in a hospital where they can do an emergency c-section if needed.


Near the end of my second trimester, my husband was offered a job in NY.  He accepted the position, and we had to pack up our house in a week.  We decided to drive.  After all, when would we ever get the opportunity to drive from CA to NY again?!  So, Matt drove the big truck, and I drove the van.  Yeah, it was pretty crazy!  It was fun though.  We made lots of memories.   I met with the only licensed midwife in the Buffalo area a couple weeks later.  We were planning a homebirth, hoping the local hospital would support running the labs for us (Matt would take the blood to the hospital immediately).  In some cases, this does work. However, this time, it did not.  Our new pediatric hematologist tried to work out the labs for us, and even an on call emergency transport.  However, the hospital would not support this plan.  Our midwife, who we loved, could not help us with a homebirth.  She was under fire from the hospital, and could only offer to help us with a hospital birth.  I was devastated.  We met with another midwife, but we couldn't work out the labs.  I met with the nurse manager at the hospital.  I told her that I wanted a waterbirth.  She told me that they did not offer waterbirth, and the room was so small that it just wouldn't work.  I was determined to have the most relaxed non-traumatic birth possible even if that meant having my baby at home and compromising the immediate lab work.  I was trying to avoid causing my baby a bleed.  I would keep him safe!!  I met with the perinatologist who asked me about my birth history and what I wanted for this birth.  When she heard my reasoning and that my only concern was the safety of my baby, she told me that I should get exact measurements of the birth pool, and get them to the nurse manager.  I did, but the NM said there was simply no room.  I asked her if we could make room for the pool by moving the bed to the hallway.  She said I shouldn't hope for this to be approved, but she would speak to "the powers that be", and get back to me.  I again shared my heart for my baby's safety with her.  The next morning,   I wept tears of joy when the NM called me and told me to order the pool!! 

*All pictures are from our trip from California to New York in August 2009*
      

Saturday, May 22, 2010

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?!!