I have struggled to write this for the past few months, but
I feel as though it is necessary to share what happened in March with our
daughter. First, I would like to thank those of you who know us personally for
respecting our privacy during the past few months. I know that you have been
curious to know what happened and scared to ask for fear of making us turn into
a quivering mess of a human. Fear not. I feel that Cora deserves her story to
be told, not only for her sake, but for those of you who may have stumbled upon
her story.
We will start at the beginning, because that is the most
appropriate place to start. Dave and I had been trying to get pregnant for a
few months when right before Christmas we found out that I was indeed pregnant.
We were so excited and overjoyed. It was so hard not to call everyone at that
moment, but with Christmas coming up, we wanted to wait and give everyone in
the immediate family a wonderful gift.
The story of how we told the family, especially the family up in Oregon,
is pretty hilarious and included my Grandmother not fully grasping the meaning
of our gift until we spelled it out for her.
The first three months of my pregnancy were pretty
fantastic. I felt sick only once, I never felt the insane first trimester
exhaustion that plagues so many and my only concern was trying to keep the
pregnancy quiet from all of our friends. We were extremely lucky that one of
our friends is an Ultrasound Tech and needed prenatal scanning experience. She
was able to practice on me a few times, giving us a few extra chances to meet
our little one, see her dance around and practice karate moves in the womb.
Then, when I was at 11 weeks along, I started to bleed. We
rushed to the urgent care/emergency room at our chosen hospital and after
testing, ultrasounds and bloodwork, it was decided that I had Placenta Previa. I wasn’t very excited
about that diagnosis and I was put on both pelvic and bed rest. That was a
Friday and Superbowl Weekend at that. Things started to calm down and we told
the family about my hospital visit and that things looked to be ok. We were,
understandably, a bit tense, but the ultrasounds showed a healthy baby,
progressing along as she should. She was even kicking the “window” of the
ultrasound to show us her cute little feet. I felt good, although a bit tired from bed
rest. (Side note: who knew that bed rest would be so exhausting?)
Then three days after our initial hospital visit, the
bleeding started up again, only this time it changed in color and quantity. We
were told that if that happened, not to worry about calling the 24 Hour Nurse
Line, but to go directly to the emergency room. So that’s what we did. We were
panicked and it was after midnight when we arrived at the hospital. They got me
in right away, took blood and urine to test. Another ultrasound showed that the
little one was still happy as can be, but that the placenta was just moving
around, causing the bleeding. We were so scared, but assured that everything
looked ok and even though I felt silly rushing to the emergency room, I was
also assured that we did the right thing.
Dave and I debated on whether to go public at the beginning
of my second trimester, but with my belly showing and the doctors assuring us
that everything looked on the up and up, we decided to tell the world that a
Little LaGuardia was indeed on its way.
It was possibly the best Valentine’s Day present we could have given to
the world, at least in our eyes, because we have been pestered constantly for
the past ten years from our friends, family and other loved ones asking when we
would become parents. The love and support we felt that day was astronomical
and I’m sure that our baby felt that too.
Things were progressing nicely. We went in for our genetic
screening, nuchal folds measurement and the like at the last possible date we
could. It was then that I felt that something was definitely wrong. Our ultrasound
tech was great and very experienced. Unfortunately she wasn’t able to get
accurate measurements of the baby. Every limb was measuring differently, giving
different fetal ages. She said it wasn’t something to be worried about because
the baby was in a weird position. So we tried not to worry. We also saw
calcified blood in our baby’s bowels. The tech figured that this was due to the
bleeding caused by the Placenta Previa, but asked us if we would come back in
another month so they could chart the baby’s growth and do further testing.
It was then that the nagging feeling that something was
wrong popped up into the forefront of my mind. I did as much research as I
could, but was left with not much more than forums without much medical
background to support prenatal freakouts. I decided to push the feeling out of
my mind and to go on with life as well as I could because stress isn’t good for
mother nor baby. During this time I was excited to go visit my family and
friends in Oregon for a long weekend. It was amazing being able to show off the
baby bump and feel so much love from those around me. I have to say that flying wasn’t very
comfortable, but people were so nice to me on the plane and at the different
airports.
A week after I returned from my trip we had our next
ultrasound. This was our 20 week checkup (that’s the halfway mark for those of
you who aren’t familiar with the pregnancy week system). We were excited, but
that nagging voice was starting to get louder. After about five minutes in the
ultrasound room, I knew something was dreadfully wrong. Our tech asked me if I
had been drinking enough water, which I had. We looked up at the screen and saw
that our baby’s amniotic fluid was dangerously low. She had no room to move and
it was then that I knew that I was either going to be hospitalized or that we
were going to lose her. The tech told us
that she was going to get the doctor and that was when I lost my cool. I
started to cry, I was trying not to freak out, but that was pretty much
impossible. When the doctor came in and started to scan all I could do was cry.
I knew something was terribly wrong.
The doctor confirmed my suspicions. Our baby had a severe
case of Holoprosencephaly, her heart
also lacked Atrioventricular (AV) Valves, and on top of that, the extremely low
levels of amniotic fluid indicated that she had horrible kidney issues (scroll
down to the bottom for medical terms/definitions). The Ultrasound Tech asked Dave
if he wanted to know the gender of our baby, as we had wanted it to be a
surprise up until then. That’s when we found out that we were going to have a
girl. He asked me to take a few moments
to compose myself and then to meet him, as well as the genetic counselor in her
office. I was heartbroken. All of the hope I had felt, all of the love I had
sent to my baby…and to know that she was hurting, it was all too much to take
in.
Dave and I went
into the office and I knew what was coming. I knew that we would be told that
the situation was dire. And indeed, it was. We had two options. The first was
to wait and see what happened, although the prognosis was that her conditions
left her “incompatible with life”. Most babies carried to term with Holoprosencephaly
are stillborn, those that are not generally only live for a few moments to a
few weeks. With the three conditions, it was impossible for our baby girl to
live outside of the womb. Again, we were told we could carry as long as my body
would allow it, but that the previous bleeding had not really been from
Placenta Previa, it occurred because my body was trying to miscarry a baby that
could not survive.
The second option
was to terminate the pregnancy.
And that is what
we chose to do.
I know a lot of
you out there do not agree with that, but as a parent, it is your duty to
protect your children from pain and suffering. If our baby had lived through
the trauma of childbirth, there would have been no time for me to hold her or
look at her she would have been taken away immediately for a heart transplant.
And with newborn hearts not being in great supply, it would have only delayed
the inevitable. The instant the doctor gave us our options I knew what we had
to do. It was the hardest decision of my life, but I also know that it was the
right one to make. I never thought that I would be in this place, where I had to
decide whether or not to keep my child. I never thought that I would have to
end a pregnancy, especially one that was so wanted. I never thought that I
would have to make that choice. And until the time came, I didn’t think that I
would be able to. But I did it for her,
I did it because I wanted our baby to know a life of happiness, not pain. I did
it so she wouldn’t suffer as I know she would have. Dave and I had had the “talk”
about terminating the pregnancy if our child had Downs Syndrome and we knew
that was something we could never do. But those kids have a chance to be happy
and healthy and our baby would never know that. Dave and I also have had the
conversation about whether or not we want to be kept on life support and we are
both against that for ourselves. In essence, our baby was on life support. I
was keeping her alive and it is unclear if she was in pain while in the womb. I
know that during those final days, when her amniotic fluid was so low, she was
not comfortable and I can only pray that she didn’t feel pain.
I did not feel
any pressure from the doctor or the hospital to terminate. And yes, for those
of you who are asking, we did have a second opinion. The genetic counselor, the
ultrasound tech, the head radiologist and another ultrasound tech confirmed all
of the issues and their severity. When we told the doctor how we wanted to
proceed, he wasn’t shocked. He wanted us to take the night and think it over,
but I knew that I wouldn’t change my mind and that if we didn’t proceed that
day I would be up all night, throwing up with the decision I was being faced
with. It was then that I asked the radiologist what he would do if he were in
our shoes. He looked quite surprised that I asked that, but answered as
honestly as he could. He said that he would choose to terminate as well,
because there was no chance of survival outside of the womb. And to keep a
child alive that has no hope is cruel.
I feel like I
need to be very clear here. IF there
had been any chance of our daughter surviving, any chance at all, we would have
carried to term. The decision we made was not made lightly and in fact, wasn’t
made with us as parents in mind. All I could think about was my little girl,
who I found out was a girl and named right there in the genetic counselor’s
office. The pain of that day is still
very much with me and as I write this, I mourn for our daughter. I mourn for
all of the hopes and dreams I had for her and I am so sad that I will never be
able to see her grow up, never kiss her forehead, never hug her tight, give her
raspberries on her tummy or tickle her little feet. I mourn for what we lost
that day, but even now, it feels as though it was a dream. That the pregnancy
was a dream and that she was never real even though I felt those little
flutters as she kicked around, letting me know that it was ok.
After making that
difficult decision, there was a lot of paperwork the hospital had to do. A lot
of red tape had to be cut and arrangements made in order to terminate the
pregnancy. We were given the office for
two hours and in that time we made very hard phone calls, letting our family
know what was going on, what the outcome was and how we were going to move
forward. Those two hours went by in a flash and soon it was time to go back
into the ultrasound room to do the Amniocentesis, which would tell us why our
daughter had so many severe issues. The procedure wasn’t too bad. They do not
give you a local anesthetic and I wish they had. It was hard to know that a
foot long needle was being stuck into my belly, but it had to be done because
we needed answers. It seemed to take forever, but the radiologist needed to get
as much amniotic fluid as he could. When he was done, Cora had nothing left
around her. Then it was the hard part. They had to insert another ridiculously
long needle into my belly, through the walls of my uterus and into Cora’s
heart. It was called a Reduction and that was used to stop her heart. Thinking about it, even now, I can feel the
pain of this procedure. It felt as though my body knew what was happening and
was trying to retaliate. This took forever and was very painful. Its almost
impossible for doctors to miss nerves and create a painless situation, but my
body went into shock. I started sweating furiously, I was swearing at the
doctor (although the words weren’t quite as creative as they probably should
have been), my teeth started chattering and all I could think about was my
little girl.
When it was over,
I had Dave and the doctor take me to the restroom where I proceeded to throw up
all over my clothes. Even then, I felt bad for the hospital staff. They are in
the business of bringing babies into the world, not taking them out. They were
unprepared and ill equipped for what happened to me. Luckily, Dave works at another
hospital and jumped into work mode. He was able to get me the help I needed,
extra clothes from the doctor, a wheelchair to take me to a recovery room and
pain meds to help with the cramping I started to feel. We met with several more
doctors while I was in the recovery room. They explained that I would have to
come in every day for the rest of the week to prepare for surgery. (I could
have delivered, but that was unthinkable to me at the time…still is.)
We went home to
rest that afternoon, packing away all of the baby clothes, furniture and books
that were throughout the house. I mostly lay in bed or in the recliner,
alternating between crying and feeling numb. The next day we went back to the
hospital for my first dilation treatment. It was called Laminaria and it is
made out of seaweed. To put it in the grossest terms, they shove these
Laminaria sticks up into your closed cervix. It hurts and they do not give you
pain meds for the treatment. The Laminaria sticks cause you to dilate, and dilate
I did. It was painful and uncomfortable. I was warned that if I started having
contractions I would need to go to the emergency room immediately. So I was
also extremely scared. Luckily no contractions happened, but laying down with
icepacks all around me was pretty much all I could do. I had to back in the
next day for another Lamanaria treatment. This one hurt even more as they
wanted me to be as dilated as I could be in order to make surgery go well.
Another side
note: if you are reading this because you are in a similar situation, I want
you to know something that no one told me. You will have phantom flutters from
your baby even after his/her heart stops beating. This is caused because your
baby is still connected to you and your body. Electrical impulses are still
there, causing your baby to move and jerk around. It is quite disheartening and
alarming…you may even think that you are going crazy, because I sure did…but
know that it is normal. Another note is that your milk can also come in and you
will want to talk with your physician about how to prevent that.
By Friday it was
time to go into surgery. I was scheduled for a D&E. For those of you who
have had miscarriages later on in your first trimester, you most likely had a
D&C. D&Es happen with a more advanced pregnancy. We met our surgeon and
found out that he is the top doctor at the hospital we are at. He sits on the
board of directors and wanted to make sure that I had the best possible
treatment I could have. When he met with us before surgery, he wanted to let me
know that the Holoprosencephaly is extremely rare at the point of the pregnancy
I was at. He also confirmed that this happened at the moment of conception,
that there wasn’t anything we could have done to prevent it and that yes, those
trips to the ER in February were because my body was trying to miscarry, which
is normally what happens to a fetus with that condition. He also told me that
over his 35 years of practicing medicine, specifically OB/GYN in very densely
populated areas at high risk clinics, he has only seen 100 cases of Holoprosencephaly.
Out of those cases very few of the babies were born alive and out of those who
were born alive, they all died within moments of birth. He had never seen Holoprosencephaly,
the heart defect and the kidney issues all present in the same baby and again,
he confirmed that we were doing the right thing for our daughter.
It was also
during this conversation we found out that we were the only case of Holoprosencephaly
the hospital had ever seen. It is just so rare.
Surgery went
well. I was put under for the whole thing. They intubated me so I could breathe
and I was told that I even started to come out from my anesthesia and they had
to give me a double dose to keep me under. I was so grateful for the staff that
day. You could tell that they were all very nervous about the procedure and
that they wanted to ensure that I was as comfortable as I could be. It was so
hard being in the recovery room when I woke up, because that’s where they take mothers
who have had a c-section. There was a crying baby in there for a bit until I
asked if they could move her to another room. That was torture, but I survived. The hardest part though was when I could
finally get off of the gurney and go to the bathroom. When I stood up, I no
longer had my baby bump. I had grown to love that bump and all it stood for and
then it was suddenly gone.
We went home to
heal and to grieve. I made the realization during this time that throughout the entire pregnancy I felt disconnected to my belly. Almost as if I knew that there was something wrong. That nagging voice in the back of my head, the one that made me worry, well, it was right. I guess call it a Mother's Intuition, but it helped prepare me for my worst fears, which did, indeed, come true. Most of that time, post surgery, is a blur since I spent it recovering
from the drugs they had me on in the hospital. I spent several days in bed and
I felt the full crushing weight of depression settle down on me. The physical
toll depression takes is amazing and I am so lucky that I was able to bounce
back from the abyss in a short amount of time. But if you are reading this
because you are in a similar situation, know that it is ok, but that you should
talk with your doctor about it, because staying in that place isn’t healthy for
you and it dishonors your baby.
A few days after
my surgery, we had to set up the cremation services for our daughter. The
hospital gave us a few options. They would dispose of her body if we wanted
them to, but I couldn’t imagine our baby in a pile of medical waste. They also
said that we could pick a funeral home to do either a cremation or a funeral
service/burial. We opted for cremation. There was one funeral home in the
Denver area that performs that service for the cost of transporting your baby
to their facility and for the cost of the paperwork they need to submit. AspenMortuaries, if you are in Denver, were the most compassionate people we worked
with. Dave called a few others to see if they provided that service and he was
told from one funeral home that they would not accommodate us because we
terminated the pregnancy. Another had their prices so astronomically high that
it wasn’t even possible to use them.
Once that was set
up, we looked around for a special urn we could place our baby girl in. We
ended up using this website: www.perfectmemorials.com
Everywhere else was astronomical and I am
sharing because if you are reading this because you are in a similar situation,
I want you to have as many resources as you can possibly have.
The day that we
were able to pick up Cora’s ashes, we received the amniocentesis results. Cora
had a condition known as Triploidy, which is so rare that the genetic counselor
had to look it up in her old textbooks to understand what it was. The diagnosis
of Triploidy explained why Cora had Holoprosencephaly as well as heart and
kidney issues. The diagnosis did not make it any easier and in fact, the name
made it sound like it wasn’t as horrible as it actually ended up being, but we
finally had some closure. What happened to us was a one in at least a million
shot. The surgeon, the radiologist, the genetic counselor and our midwife have
all confirmed that the possibility of having another Triploid pregnancy is less
than zero. We were also told that the next time we get pregnant, we will have
access to a free genetic test called Materna21 that will be done at 10 weeks to
help us know what is going on and to hopefully calm any fears we have.
Through doing
research and talking with the doctors and genetic counselors, we did find out
that no matter what, we would have had to terminate our pregnancy for my health.
A triploid pregnancy is very hard on the mother’s body. It was especially so
for me since I suffer from hypothyroidism. A triploid pregnancy can (and very
likely in my case would have) swung my thyroid into the opposite direction,
burning out that essential body part and giving me Hashimoto’s Disease. That
can also make you infertile and that was a chance that neither the doctors, nor
we wanted to take.
And now, I speak
to those who have found Cora’s story because of their own diagnosis of
Triploidy or Holoprosencephaly. I am so sorry that you or someone you love has
just gotten this diagnosis. I chose to share our story, and Cora’s story,
because I was desperate to hear that I wasn’t alone. It is such a hard thing to
feel alone, when you know that losing your baby is almost certain. I hope that
you chose the path that is right for you, as we have done for us and for Cora.
I know that terminating the pregnancy was right for us, but it might not be
right for you. Know that I hold you in a very special place in my heart. I’m
sending you love even though I don’t know you, because I understand the pain
and agony you are currently suffering from. I am so sorry that you have gotten
this diagnosis, but there is hope and I know that you will see that someday
too. I searched and searched for stories
of those who had experienced this before me and I only came across scant
details, nothing that helped comfort me or let me know that I wasn’t alone. But
I am here, right now, telling you that you are not alone. There are a lot of
people out there who are scared to share their story, I was scared too. I’m
still scared to tell people that we had to terminate the pregnancy, but I have
to remember that this was the life of MY daughter and as painful as it was/is
to lose her, I know that we did the right thing for her. I also know that she
is being taken care of by those who have gone before her…those treasured family
members who are in the great beyond already. That doesn’t make it easier, but
it is a comforting thought. Please stay strong. I know that you are hurting. Reach
out to those who love you and can support you. One of the best things my
friends did was set up a meal planning site where people could either send
food, gift cards or sign up to bring us a meal. The site was called : www.mealbaby.com I was also sent the book, “Empty Cradle,
Broken Heart” by Deborah L. Davis, Ph.D. This book helped me put some things in
perspective and also know that I’m not alone.
Last of all, I
want to take a moment to thank everyone who shared their stories of loss with
me. Those private moments you shared, even though the stories were different,
meant the world to me. I will never find someone who went through the exact
same thing that we went through, but knowing that you wonderful women, amazing
mothers and exceptional friends were willing to share those dark moments with
me, well, it means so much. You know who
you are and even if I wasn’t able to write back to you at the time, please know
that I am thanking you from the bottom of my heart. You have helped make my
recovery and reentrance into the human race a little more graceful.
Additional Note: I needed to take a few moments away from this post to publicly thank Dave, my husband, for all he has done. I wrote down a few words of my appriciation here if you want to read them.
Post Script:
To those of you
who do not understand nor support the decision we made to terminate our
pregnancy, please keep your thoughts to yourself. This is not a place for
hateful bile, so please keep those thoughts to yourself.
Medical Terms/Definitions:
What do we know
about holoprosencephaly?
Holoprosencephaly
(HPE) is a relatively common birth defect of the brain, which often can also
affect facial features, including closely spaced eyes, small head size, and
sometimes clefts of the lip and roof of the mouth, as well as other birth
defects. Holoprosencephaly is a disorder caused by the failure of the
prosencephalon (the embryonic forebrain) to sufficiently divide into the double
lobes of the cerebral hemispheres. The result is a single-lobed brain structure
and severe skull and facial defects. In most cases of holoprosencephaly, the
malformations are so severe that babies die before birth. In less severe cases,
babies are born with normal or near-normal brain development and facial
deformities that may affect the eyes, nose and upper lip.
This birth defect
occurs soon after conception. It has a prevalence of 1 in 250 during early
embryo development, and 1 in 10,000 to 1 in 20,000 at term.
There are three
classifications of holoprosencephaly:
•Alobar, in which the brain has not divided at
all, is usually associated with severe facial features.
•Semilobar, in
which the brain's hemispheres have somewhat divided, causes an intermediate
form of the disorder.
•Lobar, in which
there is considerable evidence of separate brain hemispheres, is the least
severe form. In some cases of lobar holoprosencephaly the baby's brain may be
nearly normal.
The milder
craniofacial characteristics of HPE include microcephaly, midface flattening,
hypotelorism (closely spaced eyes), flat nasal bridge, and single maxillary
central incisor. Approximately 80 percent of severe HPE have characteristic
facial features. The least severe of the facial anomalies in holoprosencephaly
is the median cleft lip (premaxillary agenesis). The most severe is cyclopia,
an abnormality characterized by a single eye located in the area normally
occupied by the root of the nose, and a missing nose or a proboscis (a
tubular-shaped nose) located above the eye. The least common facial anomaly is
ethmocephaly, in which a proboscis separates closely-set eyes. Cebocephaly,
another facial anomaly, is characterized by a small, flattened nose with a
single nostril situated below incomplete or underdeveloped closely-set eyes.
Not all
individuals with HPE are affected to the same degree, even in families where
more than one individual has this predisposition. This is why it is often
helpful to discuss these issues with a professional in genetics who is trained
to recognize features that might suggest that HPE is, or is not, likely to
occur again in a family. The risk of reoccurrence is small in most families.
There are a number of causes of HPE, including genetic alterations and
environmental effects. The cause of HPE in any individual family is often
unknown.
Genetic and
chromosome disorders can have varying and potentially far-reaching impact on a
baby's health. The effects of a chromosome can be anything from mild health
concerns to being "incompatible with life," meaning an invariably
fatal prognosis.
Triploidy is a
disorder that falls on the latter end of the spectrum. The majority of babies
with triploidy die before birth, and those that make it to term rarely survive
the first six months of life.
What Triploidy
Means:
Human beings are
supposed to have 46 chromosomes (23 pairs) with half of each pair coming from
each parent. Triploidy means that a baby has three copies of each chromosome in
each cell rather than two, making a total of 69 chromosomes. Triploidy can
result either from a single egg being fertilized by two sperm or from an error
in cell division causing either the egg or the sperm to have 46 chromosomes at
the time of fertilization.
Types of
Triploidy:
Most cases of
triploidy involve full triploidy, meaning all the body's cells are uniformly affected.
In rare cases the triploidy can be mosaic, meaning some of the body's cells
have three copies of each chromosome and others have a normal set of 46
chromosomes. There is some evidence that individuals with mosaic triploidy may
be less severely affected by the disorder than those with full triploidy. But
even with mosaic triploidy, the prognosis is not good.
Atrioventricular
septal defects (AVSD) are a relatively common family of congenital heart
defects.
Also known as
atrioventricular canal defects or endocardial cushion defects, they account for
about 5 percent of all congenital heart disease, and are most common in infants
with Down syndrome. (About 15 percent to 20 percent of newborns with Down
syndrome have an atrioventricular septal defects).
The primary
defect is the failure of formation of the part of the heart that arises from an
embryonic structure called the endocardial cushions. The endocardial cushions
are responsible for separating the central parts of the heart near the
tricuspid and mitral valves (AV valves), which separate the atria from the
ventricles.
The structures
that develop from the endocardial cushions include the lower part of the atrial
septum (wall that divides the right atrium from the left atrium) and the
ventricular septum (wall that divides the right ventricle from the left
ventricle) just below the tricuspid and mitral valves.
The endocardial
cushions also complete the separation of the mitral and tricuspid valves by
dividing the single valve between the embryonic atria and ventricles. An
atrioventricular septal defect may involve failure of formation of any or all
of these structures.
