24 Saturday Aug 2013
Posted in Stillbirth
I just submitted a short story about Ansley and HELLP Syndrome to She Writes Press. They are putting together a book entitled Three Minus One. It will be a collection of stories, art and poetry all based around the unpleasant topic of stillbirth and neonatal death. Please keep your fingers crossed that Ansley’s Story is one of 80 submissions selected.
14 Sunday Oct 2012
Posted in Grief, Stillbirth
Many people know October as Brest Cancer awareness month, but it is also pregnancy an infant loss awareness month. In 1988, President Ronald Reagan designated October as the month to bring awareness to infant deaths, including miscarriage, ectopic pregnancy, stillbirth, and SIDs or any neonatal death.
“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That is how awful the loss is.” – Jay Neugeboren
Because there is no word in the English language to describe this type of loss, it often silences those grieving.
October 15 is Pregnancy and Infant Loss Remembrance Day. It is observed in the US, Canada, the UK and New South Wales. The day is observed with an International Wave of Light. To participate light a candle at 7 PM in your time zone and leave it burning for one hour. This will create a continuous wave of light around the world. I will be lighting my candle in honor and memory of my daughter Ansley as well as all babies that have died during pregnancy, at or during birth, or after birth. Will you join me in remembering babies gone too soon?
“An Angel in the book of life wrote down my baby’s birth. And whispered as she closed the book – Too Beautiful for Earth.”
08 Monday Oct 2012
Posted in RAINBOW BABY, Stillbirth
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When I first learned that I was expecting twins, I reached out to my HELLP Syndrome message boards to see if anyone else had gone on to have a successful subsequent twin pregnancy following class 1 HELLP. I was told about a lady in the UK, we will call her Ann, that was a member of another board and was currently in her second trimester with twins.
I reached out to Ann and introduced myself. I soon discovered we had very similar histories; both of us losing our daughters early in the third trimester when class 1 HELLP stuck suddenly. She was advised much like me to wait at least a year to try again and had many of the same tests done looking for anything that gives a clue as to why this happened.
At exactly the one year mark, Ann and her husband decided to try again. Surprise… they were expecting twins. While she felt comfortable with her doctors, she also was working with a doctor at a major research university in the US. And, while the doctors didn’t always agree on her course of care, she was being monitored very closely. She was actually being watched closer than I am. She was having blood work done weekly and in office BP checks twice a week.
I received an email from Ann this morning. She wanted to let me know at 25 weeks she developed HELLP again. And, again they quickly deemed her life was in grave danger and made the decision to deliver the twins. Neither twin survived.
My heart goes out to Ann, she has no living children, but now 3 babies in heaven. I cannot fathom going through that kind of loss again. It is a scary reality. Ann was the only one I could find in more than 17 countries (that is active on these boards) that was also expecting twins. I know that just because her story ended in another loss, it doesn’t mean mine will as well, but I was really hopeful she would have a successful pregnancy and that I could use that as inspiration. But instead, her story now reiterates the trepidation that I have already been feeling.
13 Friday Jul 2012
Posted in Stillbirth
One of the challenges I have faced over the past 16 months is quieting all the questions that frequently fill my head. Questions most of which don’t have answers.
…Just to name a few
I have spent hours and hours reading medical journals and anything else I could find on HELLP Syndrome seeking answers. There are tons of theories and even more statistics, but at the end of the day they all say the same thing. Because there is no known cause; there is no known way to prevent HELLP and the only treatment is to deliver as soon as possible. How can this be, with so many advances in modern medicine that so little is known about this deadly condition? {Yet another question}
As I researched, the question that really got under my skin was: why had I never heard of this before? I read baby books and spent countless hours on baby websites, not once had I heard of HELLP Syndrome. I was very annoyed when I went to the March of Dimes website and there was no mention of HELLP under pregnancy complications. There moto is “Working together for stronger, healthier babies”. (I am glad to report that as of April of 2012, it is now listed. Not sure if it was due to my emails as I never got a reply, but regardless, glad it is listed now)
At times, I have felt even some in the medical industry don’t really know much about HELLP. I say that not because of my OBGYN or my primary care doctor, in fact I have been very pleased with the care I have gotten from both of them. But, over the past year, I have had to see countless doctors. The first doctor that shocked me was a neurologist; I suffer from migraines and have seen various neurologists for many years. He told me on several occasions he had never met anyone that had a case like mine; he had only ever read about it. Months later I had to see a cardiologist, as were talking he had a nurse taking notes. She stopped the conversation to say, I don’t know how to code this. I don’t see HELLP as a condition in our system and I don’t know what it is. He told her to put it under either PreEclampsia or Eclampsia and note it was HELLP. At least he knew what category it would fall into.
The irony is while I have had doctors tell me they aren’t exceptional familiar with HELLP, every labor and delivery nurse I come across seems to feel they are an expert on the topic. I say they feel they are an expert because it takes very little time talking with them to realize they usually are not. I had one go as far as to tell me I should sue my doctor for missing my PreEclampsia and letting it get all the way to HELLP. When I told her I never had PreE she said, “No, that is impossible.” Sorry to tell her, it is very possible. My blood pressure was good until the day it all went wrong and I was not swollen at all. I had another nurse tell me “She sees HELLP all the time, and whoever told me it was rare was wrong”. No comment on that one.
But, as I mentioned earlier my main doctors have been great. When I first saw my primary care doctor and told her what had happened, she asked me for my OBGYN’s info. She promptly called her to discussed my case and asked if she could send over all of my records. She has gone to great lengths to educate herself on HELLP Syndrome. And, any test she runs she sends over to my OBGYN. As the patient I really appreciate this, it is nice to have your doctors on the same page and it prevents any unnecessary double tests.
As I approached the one year post HELLP mark, my primary care doctor wanted to do a complete physical to make sure my body had recovered fully. This would also start the process of me (and the doctors) determining if we would try for another baby. In addition to the normal physical tests, she tested for various types of Thrombophilia. She explained that my insurance may not cover these tests, since I had not had multiple miscarriages, but they only costs a few hundred dollars if not covered. They tested me for both Leiden Factor 5 and MTHFR .
A few days later I received a call from my doctor. The test results were in. I tested positive for 2 variants of MTHFR and they were running an additional test to see if my homocysteine levels were affected, which they were not. She explained about 30% of the population, including her, has at least one of these genetic abnormalities. And really, it just means extra folic acid and maybe blood thinners in a future pregnancy.
As I processed this news, I got angry. You mean there was a simple blood test that could have been done? And, while maybe it wouldn’t have made a difference, maybe it would have. But, it isn’t a standard pregnancy test because someone behind the desk at an insurance agency won’t cover it unless you have had multiple miscarriages or like in my case test positive. I realized the link between MTHFR and HELLP is nothing more than one of the many theories, but still… I am a member of a HELLP survivor board and almost everyone on that board tested positive. Maybe a coincidence or maybe something more, guess I will add this to my list of unanswerable questions.
06 Friday Jul 2012
Posted in Grief, Stillbirth
Deciding which room would be the baby’s room was not a hard decision for us. After all, we lived in a 2 bedroom house. The question was what do we do with the guest bedroom furniture and the office? The room was already pulling double duty. We decided to get a storage unit for the guest bedroom stuff, but what to do with the office. The office was a necessity as I sometimes work from home. That is when we decided to take on a rather major home renovation. Our house had a double master floor plan, meaning the 2nd bedroom was almost as large as our master and had a large walk-in closet. The closet contained its own window. I decided if we knocked out the wall at the top of our stairs, it would expose that window allowing natural light to flow into a normally dark hallway and provide the perfect space for an office nook. And, luckily for me, I married a very handy guy who could handle that project.
The first thing he did was frame out 2 new closets inside the bedroom with an opening in the middle. He figured if he built the new closets first we were less likely to end up on HGTV’s DIY disasters. Once they were framed, he took to demoing the wall. And, wow what a difference it made to let the sun shine in. Finally we had to drywall in the old doorway to the closet. The whole project took a couple of months and there were only a few bumps in the road.
Closets being framed in
Finished closets
The new office space looked great and the space worked perfect.
Office Nook
Decorated Office Space
We had decided to put the crib inside the opening between the 2 closets. So, the last step to the renovation was Chris’s surprise for me. He ordered fiber optics and created a starry sky, wired to a light switch, so she could sleep under the stars every night. It was a very cool touch. By this time, we had found out it was Girl and color and design selection was under way. I am not a pastel pink kinda girl, so I went will less traditional colors; yellow, blue, red, and brown for the bedding. We did most of the room yellow with a blue accent wall and we did her bathroom the same shade of blue. I realize prior to the bedding getting added most people would look at the nursery and assume it was boy based on the colors.
The nursery colors with a pillow from her bedding
Her closet had quickly filled with a newborn – 18 month wardrobe. We had her home from the hospital outfit and even her Christmas dress. She was going to be a well dressed little girl.
So when everything changed, and we learned she would never be coming home to her nursery, the question became what do you do with all that stuff? What do you do with the room? The room that you had dedicated to her. The room you had poured your heart and soul into; making sure every last detail was perfect.
Chris came home the day before I was to be released from the hospital and gathered all the baby stuff (which had spread out all over the house) and put it in the nursery and closed the door. I took me 3 months after she was gone to even brave opening that door and a full additional month to actually step foot into ‘Ansley’s room.’
It wasn’t long before Chris wanted to turn the room back into the guest bedroom it once was. To me, that was impossible. It would always be Ansley’s room.
As time went on, we eventually had house guests again. And, every time someone slept in Ansley’s room, my heart broke just a little bit more. Reflecting back now, maybe that was one of the reasons we moved away from our first house.
15 Tuesday May 2012
Posted in Grief, Stillbirth
Tags
In the days following my first trip out of the house, I decided to try to catch up on some emails. I was reading emails in small doses as sympathy can be hard to deal with. I saw a message titled “So sorry”. I opened the message and read the first line. My name is Christy and we have some mutual friends. Although I had never met Christy, I knew exactly who she was.
October 29, 2010… Chris and I went to our friends Matt and Robyn’s new house for a Halloween party. It was there that I first heard Christy’s story.
She was only a few days away from her due date, when she woke in the middle of the night with a fever. As she sat in bed, it dawned on her that she had only felt contractions not the baby moving. She woke her parents, whom she had move in with mid-pregnancy, and told them they needed to go to the hospital. It was there that she received the news that her daughter had passed away. The doctors induced Christy and her daughter, Evelyn Marie was born the next day. They later learned she most likely died from a cord injury; the umbilical cord had wrapped around her neck. (www.babyevie.com)
I stood in the kitchen blinking back tears. I had known several people who had miscarried, but Christy was well past the 12 week danger zone, she was full term. My heart broke for her. Little did I know, at that very moment I was pregnant with Ansley. We would find out I was expecting 5 days later!
24 Tuesday Apr 2012
Posted in Grief, Stillbirth
When the doctor finally lifted my bed rest orders, Chris and I decided I should try to get out of the house some; re-enter the world. It is funny thing, as much as you can wish for the world to stop turning when going through such a challenging time, that is simply not what happens. Life goes on but getting back to it is much easier said than done. It is much like trying to jump onto a moving train.
My first outing was to a nail salon near my house to get a pedicure. Everything was going fine until the lady tried to make small talk. Her first question although seemingly innocent was,
Do you have children?
I froze; it was as if the question paralyzed me. Of course, she assumed I didn’t hear or understand her so she asked me again. I still didn’t answer.
It was that moment that I realized I don’t know how to answer that question. If I say yes and acknowledge Ansley as my daughter the way I would like to, the questions will continue, with boy or girl, followed by how old until finally I have to say she is dead. I couldn’t even say her name without crying, so this was probably not the best option if I was going to try to hold it together while in public. But, if I say no, then I feel incredibly guilty for not acknowledging her.
The third time she asked me, I said no. It was in a tone of me yelling it at her but in the volume of a whisper. She didn’t ask any more questions, and I didn’t wait until my toes were dry to leave. I couldn’t get out of there soon enough. The guilt from that one little word was almost more than I could bear.
I asked Chris how he would answer that question when he got home. He was as dumbfound as I was. Maybe it would be easier if there was a word. When your husband dies, you become a widow. When your wife dies, you become widower. When children loose parents they become orphans. What about when parents loose children?
It has now been over a year and I still struggle with this question. Sometimes I say yes, but often I say no. I have been able to justify in my mind that when I say no, I am only speaking about living children. Do you have rather than have you had. I realize it is just semantics, but it allows me to sleep at night.
18 Wednesday Apr 2012
Posted in Grief, Stillbirth
Tags
Upon getting home from the hospital, I was under strict orders.
Order 1) bed rest
Order 2) very limited company
I was not to get worked up at all as it could cause a major setback. I was seeing the doctor every other day to make sure I was continuing to improve. My doctor was very careful to keep me as calm as possible in her office. As soon as I arrived, I was immediately put in a room and was often escorted out a back door as to not come face to face with a pregnant women or new baby.
At home, her orders gave me the perfect excuse to not talk about what had happened. It was like a license to crawl into my very own dark hole (aka my bed) and not come out until I was ready. I was still in the shock and denial phase of my grief, but I was beginning to get a glimpse here and there of pain and/or anger.
When I finally felt ready to talk or more accurately couldn’t hide any longer; I gradually began letting people back into my life. Many people offered condolences and tons of kind words, but to say I shocked at some of the things said would be a complete and utter understatement. I appreciate how hard it is to know what to say. I loved hearing people use her name; it provided comfort that she would be remembered. Some of my favorite and most helpful comments were:
– “That just sucks” – this one was said by someone I wouldn’t expect to use the word sucks. So it was very meaningful.
– The classic “I’m sorry” and “Your in my thoughts and prayers”
– “I know what you are going through… No, I take that back, I don’t know what you are going through, I have not walked in your shoes, but I am sure it is harder than I could even imagine.”
– And finally, Chris’ grandfather, who is battling cancer and I were both told in one sitting that we looked well, he leaned over and whispered “Don’t we wish.”
I also want to share some of the things that were less helpful to me and explain why, because some of these statements are not very obvious while others are. In full disclosure, if you think you might have said one of these comments to Chris or me please don’t feel bad; I have come to realize that none of the comments were meant to be hurtful and people only commented because they care and/or wanted to learn about what had happened.
– “Your still young” – What does that have to do with anything? It is okay that I lost my daughter because I am young?
– “So…Is it like you are allergic to babies?” or “Can your body just not hold a pregnancy?” – Really!!! How about a simple What Happened?
– “You can always have more children” – Well maybe or maybe not. That is yet to be determined. And even if I can, a new baby won’t replace Ansley.
– “You have your very own angel now” – I didn’t want and angel, I wanted a baby. This one I had a particularly hard time with and it is hard to explain why. It no longer bothers me the way it once did although still not my favorite comment. In my mind, every time someone called Ansley an angel it made her less of a real person and more of an inanimate object.
– “God has a plan” –Gotta tell you, I really didn’t like this part of his plan.
– “Maybe it was for the best” – FOR WHOM?
– In reference to my delivery, “At least she was small” – A) tell that to my contractions and B) had she been bigger/ stronger, she would have had a much higher survival rate.
– “Imagine how hard this would be if you had known her” – The most shocking part of this comment was that it was made by a pregnant women. I was speechless. The relationship between a mother and her unborn child is intimate and real.
– “Why are you waiting so long to try again, you aren’t getting any younger”- This one was said recently, as if I needed the reminder that I am getting older. I will be 32 in a week and a half. I know how old I am.
11 Wednesday Apr 2012
Posted in Stillbirth
Almost a week had past, most of which was a blur. The nurse came into my room and told me that I was doing better than they had anticipated and I may get to go home a day or two early. My platelet count had climbed by about 100,000, and although I was not 100%, I was well out of the woods.
This sounds like it would be great news! After all, nobody wants to be in the hospital. But, I immediately had mixed feelings about leaving.
Later that afternoon, it was official, I was going home. I changed out of my hospital gown into normal clothes. Chris and I began to pack up the room we had called home for the last week. I was sent so many lovely flowers and cards. About half way through packing up, I got very emotional. Leaving was about to be a cruel reality.
I would not be leaving the hospital with a baby in my arms. I would not be arriving home to “It’s a Girl” balloons tied to the mailbox. All the plans we had made, now just memories of a happier time.
A tech arrived with the wheel chair to take me to the car. As I sat down, my eyes fixed on the bassinet that Ansley spent her day in. It was now empty. On the way out, I noticed the sad rain cloud on my door. I deemed it was fitting for how I felt. None should ever have to leave labor and delivery without a baby. I was empty; arms and all.
As we got outside, I couldn’t help but notice what a beautiful day it was. The cherry trees were in full bloom, the tulips danced in the cool spring breeze. It would have been a great day to introduce Ansley to the world.
02 Monday Apr 2012
Posted in Pregnancy, Stillbirth
Tags
The time had come to deliver Ansley. My contractions were almost constant. In an instant, my hospital room transformed into a delivery room. On one of my final pushes, I realized Chris was no longer by my side. I looked around the dimly lit room, my eyes focusing through the tears, and see him in the far corner of the room facing the wall. Within seconds he fell to his knees overcome with grief and although it didn’t seem possible, my heart broke even more.
A few minutes later Ansley was born. She was so small; much smaller than anyone anticipated. After all, it was just a month earlier that she was measuring big. She was about the size a baby should be at 22 weeks. Apparently, HELLP syndrome had been manifesting in my body for a few weeks. Intrauterine Growth restriction (IUGR) is yet another complication caused by HELLP Syndrome. Had we been able to have the c-section in time, based on Ansley’s size, her survival rate would have been less than 1%.
I asked the doctor why she died. It was likely the perfect storm. She was tangled up in her umbilical cord, although my doctor didn’t think that had much to do with it. There was also a true knot in her cord; this combined with having a hard time getting blood, nutrients and oxygen from me was likely the reason. She wasn’t going to order an autopsy. At the end of the day, HELLP Syndrome was the cause of death. She said they would send my placenta off for testing; that would provide more helpful information than an autopsy.
By the time the nurse had cleaned Ansley up and handed her to us, the sun had come up. We studied our daughter memorizing every detail. She had my lips, my nose, and the same little fold in her ear as I have. But, she had her daddy’s long torso, and her face was the same shape as his. She was a perfect blend of both of us.
As we looked at our daughter, I managed to convince myself that she was breathing. And for just a minute I thought they were wrong that she wasn’t dead. Chris assured me she was not breathing, but then I heard it again. As it turns out, what I was hearing was the inflatable wraps they put on your feet and legs. I had heard the wraps inflate and deflate for the last several days, but between all my medicines, the lack of sleep and the pure desire to have my daughter live I had forgotten all about them.
The nurse returned with the smallest little outfit I had ever seen. We dressed Ansley and laid her in the bassinet. She had many visitors waiting to meet her. My parents were already in the waiting room and Chris’ parents were on their way. Later that afternoon his grandparents and my friend Maren stopped by to meet Ansley.
Ansley spent the day in my hospital room. It would be the only time Chris and I would have to spend with our daughter. The hardest part of the day came that evening- when we were told we had to say goodbye. I held my daughter for what would be the last time.
Just when I thought I was done for the day, emotionally, physically and mentally exhausted. I was presented with paperwork. The paperwork recorded Chris and I as her parents, her birth name and date and decisions like what funeral home she would be taken to and if we wanted her buried or cremated. Decisions nobody should have to make on their child’s “birth” day.
