My Family |
At the age of fifteen, I was diagnosed with a serious
congenital heart condition, Bicuspid Aortic Stenosis. At the age of eighteen, I
was told I needed to have children as soon as possible, something that was far
from my mind at that time.
I married my soul mate in 2011 at the age of twenty six,
children were on our immediate agenda and I quickly sort the advice of a
cardiac specialist to find out whether it was safe for me to get pregnant. At
the appointment I was told it should be safe and a follow up echocardiogram
should confirm this. We took this as a good sign and immediately started trying
to conceive, positive news quickly followed. We had succeeded at our first
attempt to conceive and I was pregnant. Two weeks later I attended the
specialist to receive the result of my echocardiogram, the news was not
positive. The specialist told us I should not get pregnant before having my
aortic valve replaced as the valve area was under the safe allowance of one
centimetre. At this stage we told the specialist I was already two weeks
pregnant. My care was transferred to Flinders Medical Centre, which
was 45 minutes from our house, on a good day. I was considered a high risk
patient. I made all the doctors nervous and all medical departments involved
knew who I was. The pregnancy was fairly uneventful, other than breathlessness,
some slight chest pain, swelling and palpitations, that was until twenty nine
weeks gestation. I walked into my obstetricians office on this one Friday, she
took one look at me and rushed me to be admitted. I couldn’t say three words
without taking a breath, I was clammy and my lungs had fluid on them. My heart
had started to fail. I remember seeing the surgical equipment sitting outside
of my room just in case. I was given steroids for the baby’s lungs and
preparations were made to deliver me after the weekend. All of my medications
were increased and the medical team worked hard to clear the fluid off my
lungs, fortunately they succeeded and by Monday I was doing a lot better. I continued the pregnancy without event. I met with the anaesthetist and was told I had a 1 in 100 chance of not making the surgery and a 50 percent chance of complications occurring, I cried. I found it particularly hard to bond with my first unborn child, I even remember telling my husband I wanted her to call me Simone instead of mummy. On some level I blamed our unborn daughter for my deteriorating health and possibility of not being around to meet her; I knew I needed to seek counselling so I did. The mental health nurse helped me prepare for the worst case scenario, I prepared my will and wrote letters to my husband and unborn child. I cried often at the possibilities and days before the surgery my husband and I embraced crying in each other’s arms, we were scared. At 36 weeks and 2 days gestation, on the 27th March 2012, the planned caesarean section was performed under general anaesthetic. Our daughter was born and everything went well, I spent 36 hours in the Intensive Care Unit for observation before being transferred to the normal maternity ward. I met Isabella Jade approximately five hours after the surgery, she spent three days in the NICU and was then released to room in with me. Isabella was perfect and I had no problems at all connecting with her. My health returned and my heart symptoms disappeared after the pregnancy.
Isabella and me |
Approximately sixteen months later we decided we wanted to
start trying for our second child. Again we discussed this with my
cardiologist, Doctor Robert Minson at Flinders Cardiac Clinic, and he gave us
the all clear. We had done this before, we knew I could make it through the
surgery. We were quietly confident everything would be just fine, so we started
trying to conceive. Soon after we received positive news, we had again
succeeded at our first attempt to conceive our second child. By six weeks, my
care was transferred to Flinders Medical Centre, under Doctor Jay MacGavigan
and Doctor Bill Jefferies. Every two weeks I drove an hour and a half to attend
appointments.
Symptoms of heart failure started presenting by eleven weeks and my doctors quickly responded by increasing my medications as necessary. I was feeling good, enjoying my second pregnancy unlike I had been able to do with my first. We had done this before, I had survived my last pregnancy and I knew I could again. We were so confident that I didn't even have any plans to prepare for my death this time. The pregnancy progressed quickly and before we knew it I was twenty weeks along. We attended the anomaly scan and it was wonderful to see our growing baby, we decided not to find out the gender of bubs. One week later I attended a routine appointment with Doctor MacGavigan. I was feeling really good. I walked into my doctor’s office and the first thing she said to me was “you don’t do things by halves do you Simone”? I was confused, I thought things were going so well, I asked the doctor what I had done, at this time she informed me that the placenta was completely covering my cervix. I asked the doctor what she meant, she told me that I had complete placenta previa which would result in a caesarean section. I am not allowed to give birth naturally or go into labour normally because of my heart condition, so I was already having a planned caesarean section anyway however as the doctor revealed the concern was that the placenta was sitting directly over my previous caesarean scar and that it could have attached. “If that is the case I will have to do a hysterectomy”….
All I heard was the word hysterectomy, we had been talking about having a third baby, I wanted a third baby. I was told that I needed to be on pelvic rest and if I had a bleed I would need to come directly to the emergency department of the nearest hospital. I left the hospital hysterical, without asking any questions. I phoned my mum and husband and broke the news but none of us truly understood what I was facing.
Symptoms of heart failure started presenting by eleven weeks and my doctors quickly responded by increasing my medications as necessary. I was feeling good, enjoying my second pregnancy unlike I had been able to do with my first. We had done this before, I had survived my last pregnancy and I knew I could again. We were so confident that I didn't even have any plans to prepare for my death this time. The pregnancy progressed quickly and before we knew it I was twenty weeks along. We attended the anomaly scan and it was wonderful to see our growing baby, we decided not to find out the gender of bubs. One week later I attended a routine appointment with Doctor MacGavigan. I was feeling really good. I walked into my doctor’s office and the first thing she said to me was “you don’t do things by halves do you Simone”? I was confused, I thought things were going so well, I asked the doctor what I had done, at this time she informed me that the placenta was completely covering my cervix. I asked the doctor what she meant, she told me that I had complete placenta previa which would result in a caesarean section. I am not allowed to give birth naturally or go into labour normally because of my heart condition, so I was already having a planned caesarean section anyway however as the doctor revealed the concern was that the placenta was sitting directly over my previous caesarean scar and that it could have attached. “If that is the case I will have to do a hysterectomy”….
All I heard was the word hysterectomy, we had been talking about having a third baby, I wanted a third baby. I was told that I needed to be on pelvic rest and if I had a bleed I would need to come directly to the emergency department of the nearest hospital. I left the hospital hysterical, without asking any questions. I phoned my mum and husband and broke the news but none of us truly understood what I was facing.
Pregnant with Noah at 32 Weeks
|
At 24 weeks gestation I had a MRI scan to see if the accreta
could be confirmed. I clang onto hope that this was all just a mistake and the
MRI scan would say I didn’t have the accreta. The MRI scan results came back
inconclusive. That same day we had a scan to see what the gender of the baby
was, I needed to address my letters and gifts to my baby properly. I cried when
it was revealed that we were having a boy. As the weeks went on, I learnt more
and more about accreta, what is was, why it happened, the risk factors,
diagnosis and treatment. I learnt that it was hard to positively diagnose as it
could not be easily detected on ultrasound or MRI. Medical professionals were
able to suspect accreta based on the position of the placenta and risk factors,
including previous births and caesarean sections, previous dilation and
curettage’s, maternal age and history of any other uterine scarring but they
could not be positive. However, the condition was considered rare. At my 28
week ultrasound, I again held out hope that they would discover I did not have
the accreta or the placenta had moved and again the results were inconclusive.
Our baby was growing well though, this was a relief.
Smallprint pins |
At approximately 30 weeks I was told I needed to stop
working so I did. As the weeks went by, we came to terms with the fact it was
likely I had the accreta, or possibly worse. I began preparing for the worst
case scenario. I felt like a ticking time bomb as I waited for the “big bleed”
as a result of the complete placenta previa. I was still on pelvic rest which
meant I was unable to be intimate with my husband and was unable to perform any
strenuous activity. I was also not allowed to be more than 30 minutes away from
any major hospital. It was all taking a toll on my relationship with my
husband, my family and my friends. I spent my time preparing special gifts for
my children including a patchwork quilt for my unborn son and a patchwork
cushion for my daughter. I also had silver Smallprint pins made for them with
my fingerprint on them so that I could still be close on those special days,
even if I was not there in person. I tried to enjoy what I believed to be my
last few months of my life spending quality time with my daughter.
Cushion I Made for my Daughter |
Just before 32 weeks I had another MRI scan, we were hopeful
this scan would give us answers. I was scared to find out the results but also
optimistic. At this time my care was transferred to Doctor Elinor Atkinson.
Doctor Atkinson had 37 years’ experience in obstetrics as well as extensive
experience with patients suffering placenta previa and accreta. At my first
appointment with her I would get the results of the MRI and I had a long list
of questions to ask her. The MRI scan was again inconclusive. I was devastated.
Doctor Atkinson was able to answer all my questions though and before I even
asked she discussed preventative and interventional measures such as iliac
balloon catheters, central lines, a vertical (classical) incision and cell
savers (a machine in the operating room which would clean a portion of the
blood I lost and return it to me). I felt extremely confident with Elinor and I
asked her straight “do you think I have the accreta”, she nodded and said she
would be amazed if she got in there and it wasn’t an accreta, I was a sitting
duck for it. Things were getting hard at this stage as I was getting more and
more tired and was now attending up to 4 appointments a fortnight at the
hospital, the driving was horrible and I was feeling miserable. During this
week we got 3D ultrasound done and I had a maternity photo shoot which helped
me bond with my baby and enjoy the pregnancy even for a short time.
Noah in Utero |
A week later I met with the anaesthetists. A junior doctor
discussed the procedure with me, he was very mundane in his explanation, it was
clear he didn’t seem confident at all. A senior anaesthetist joined the
appointment approximately one hour in. Doctor Tim Porter was humorous in his
discussions, but he made it clear that they were all very nervous going into my
surgery. Based on my heart condition and the suspected Placenta Accreta I was
given a 1 in 20 chance of dying and a 66% chance of complications occurring
which could also result in death. Suddenly it all dawned on me, I smiled and
laughed at Tim’s jokes and acted like I wasn’t fazed but I was scared, so very
scared. From that time onwards I became a wreck. My mind was a mess and I remember hoping I wouldn't have the "big" bleed but also wishing that I did because I had heard you don't normally bleed when you had Accreta. I thought if I could just have a bleed it would mean I didn't have Accreta. I cried almost every night in
the shower while my husband slept and during the day while he worked. Night after night I watched
my daughter sleep for up to an hour sometimes, taking in her smell, her little
hands and feet, the feel of her soft skin, her perfection.
At 33 weeks +6 days pregnant, we met with Dr Elinor
Atkinson. Elinor set the date of the Caesarean section for the 13th March 2014,
I would be 35 weeks +6 days pregnant. I would be admitted 2 days prior to have
steroid injections for my baby’s lungs and so all doctors involved could meet
with me if they wanted to. I had complained to Elinor about reduced movements
that were more painful, Elinor ordered a CTG test to check the baby’s
movements. The test ran for approximately 30 minutes and during that time bubs
moved plenty. Everything appeared good, we just had to wait for the day of the
c section. At 34 weeks + 4 days I had another growth scan as requested by
Elinor. At the scan sonographer took a very long time to do the scan, I assumed
she was looking to confirm the Accreta. I asked lots of questions at the scan,
including if I had placental lakes, which I did. By this stage I knew a lot
about Accreta and I knew placental lakes were a sign of Accreta. After an hour
of scanning, the sonographer called the doctor in, I could hear her saying “see
it disappears there”, I knew she was talking about the uterine wall and I just
knew I had the Accreta, but still they would not confirm it. I also heard the
sonographers and the doctor talking about the amniotic fluid and at the end of
the appointment I was asked to stay until they could speak with an
obstetrician. The on call obstetrician came down to see me and explained that
the amniotic fluid was low and that she was unable to get hold of my doctor but
she would call me once she was able to. I phoned my husband and my family, I
knew I was most likely going to be admitted. At 3 pm that afternoon the on call
obstetrician called me and asked me to return to the hospital as Elinor wanted
to admit me until the surgery.
Quilt that I Made for my Son |
I was grateful not to have been admitted till now, but I
still had so much to do. I asked to be admitted the next day instead and that
night I had my waxing done, finished off the gifts for my children, properly
packed and finished my unborn son’s nursery. The next day I had my hair done in
the morning and then my mum watched our daughter while we made the trip to the
hospital for my admission. Not much happened the first day I was there but on
the Thursday at 34 weeks + 6 days I was sent for another ultrasound. My fluid
was still about half of what it was meant to be. Elinor spoke with me, as I had
not had any problems with my amniotic fluid until now, she was concerned that
my membranes had ruptured or the placenta had stopped working...both were
dangerous to our baby. It was decided I would deliver the next day either in
the morning or late afternoon, depending on when she could get everyone together. I called my husband at work and he
immediately went and picked up our daughter from Child Care and came to the
hospital, we both knew this could be our final moments together. I also phoned
the rest of my family to let them know. That day I raced around the hospital
updating my will, getting it printed and signed, as well as finishing off our
birth plan and getting that printed. Our birth plan included details of what I
wanted to happen if I was on life support. We spent the afternoon just being
together. I would be prepared for delivery at 8:30 am the next morning at
exactly 35 weeks gestation. That night one of my closest friends and sisters
came to visit, although unspoken we all knew they were there to say goodbye to
me. I shed a tear as my sister gave me a keepsake pendant and as they all left.
My husband, daughter and I spent the next hour embracing on the hospital bed, I
didn’t want to let my baby girl go. I said my goodbyes. That night I stayed up
till 3:00 am writing letters to my family, outlining funeral details, financial
details and recording video’s for my husband and children. I cried and cried as
I recorded myself singing my daughters favourite nursery rhymes. I slept for 3
hours.
My husband and mum arrived at the hospital at 7:15 am.
Numerous doctors and nurses visited my room that morning. I signed numerous
forms giving permission for certain things including the hysterectomy if it
came to that. Doctor Steven Scroggs, the obstetrician helping Elinor Atkinson
deliver our baby, visited my room. Steven told me that the doctors did not want
me to ever get pregnant again if I survived the surgery and did not require a
hysterectomy. Steven asked how I was going to ensure that did not get pregnant, I said I would use
contraception, but Steven was not happy with this, he suggested I have my
fallopian tubes removed which was the only 100 percent effective option. I
asked him to let me think about it for a short time. It was so hard to make
this decision, but my mum begged me to do it “Simone next time you will die”, I
heard the fear in her voice and I knew I could never do this to my family
again. We called Steven back and he got me to sign the consent to remove my
fallopian tubes.
At approximately 9:00 am I was wheeled around to the operating theatres, I cried as I said goodbye to my mum but quickly composed myself. In recovery the anaesthetists put in 3 large IV’s and an arterial line, I could feel him putting the line in so they began giving me something to calm my nerves. I become a comedian as I joked about drinking wine after the surgery and other things. At approximately 10:00 am I was taken to radiology where they inserted the iliac balloon catheters in my main arteries, my husband had to wait outside during this time, and the junior anaesthetist, Doctor Jackson Lee, comforted me as he stroked my face and explained everything that was happening, answering all my questions every time I felt something. The balloons were in by 11:00 am and I was wheeled to the operating theatre, saying goodbye to my husband on the way, I took everything in and was able to take notice of the many people in the theatre. I had come to terms with what was going to happen and had prepared to the best of my ability for those that I would leave behind. I had to have absolute trust in my medical team and I did. Knowing all of this I remained completely calm, the last thing I remember is being told to stop talking and having the oxygen mask put over my face. While under the general, I had a central line fitted to my neck and stints put in my urethra by urology.
At approximately 9:00 am I was wheeled around to the operating theatres, I cried as I said goodbye to my mum but quickly composed myself. In recovery the anaesthetists put in 3 large IV’s and an arterial line, I could feel him putting the line in so they began giving me something to calm my nerves. I become a comedian as I joked about drinking wine after the surgery and other things. At approximately 10:00 am I was taken to radiology where they inserted the iliac balloon catheters in my main arteries, my husband had to wait outside during this time, and the junior anaesthetist, Doctor Jackson Lee, comforted me as he stroked my face and explained everything that was happening, answering all my questions every time I felt something. The balloons were in by 11:00 am and I was wheeled to the operating theatre, saying goodbye to my husband on the way, I took everything in and was able to take notice of the many people in the theatre. I had come to terms with what was going to happen and had prepared to the best of my ability for those that I would leave behind. I had to have absolute trust in my medical team and I did. Knowing all of this I remained completely calm, the last thing I remember is being told to stop talking and having the oxygen mask put over my face. While under the general, I had a central line fitted to my neck and stints put in my urethra by urology.
It felt like only 10 minutes later that I woke in recovery,
I could not believe I was alive! I chanted “I’m alive, I’m alive”? I cried and
thanked the doctors before asking if I had the Accreta and if I had a hysterectomy,
they confirmed both. It was almost 4:30 pm when I was taken around to the
Intensive Care Unit, and after 5:00 pm when my mum and husband were able to see
me. Seeing them both was amazing. I was extremely sore, drowsy and had no
energy. I knew nothing about my baby,
but was informed by my husband that although intubated the baby was doing okay.
Noah Justin was born at 12:15 pm, more than an hour after I had been put under
the general anaesthetic, weighing 2510 grams, and 49 centimetres long.
Baby Noah |
He
was in level one intensive care for 48 hours and intubated for 12 hours due to
being under the general anaesthetic for so long. Noah had an umbilical catheter
as well as various other cords monitoring him. I was able to see photo’s on a
camera and the NICU had printed photos out for me to hang in my ICU room.
Steven Scroggs visited me in the ICU not long after I arrived in there, he
informed me that once he opened me up they found huge blood vessels the size of
his fingers and thumbs riddled through my uterus and cervix. Steven confirmed
it was in fact Increta instead of the suspected Accreta.
Dad and Noah |
He was forced to take the vertical incision approximately 10 centimetres above my belly button, approximately 25 centimetres in total. They slowly and carefully worked to remove the baby and then my uterus and cervix, the surgery took approximately 4 and a half hours. During surgery they did require the use of the iliac balloons and I am very thankful I had them as I lost only 1500 mls of blood, 800 of which I had cleaned and returned to me via the cell saver machine. In the evening the ICU doctor removed the catheters from the arteries in my groin, upon pulling them out several pockets of blood formed, called Haematomas, these were extremely painful.
My night in the ICU went well other than the extreme pain and low blood pressure. The morning after the surgery the nursing staff helped me to move from my bed into a cloud chair in preparation to go see my baby for the first time. It was so very painful but was so worth it to see my gorgeous boy for the first time. The nurses helped me to hold Noah but I was so tired and in pain so could only be there for a short time. I was also able to see my husband and daughter for a short time.
First time holding my son! |
That afternoon I was moved to the birthing and assessment
suite, although I had already had my baby, I still required a high level of
care and this could not be given on the maternity ward. I remember I kept
saying I was hot in the ICU and this continued in BAS. The nurses began taking
my temperature, I was running a fever and was dozing in and out of
consciousness. They immediately began me on 3 courses of antibiotics and
searched for where an infection might be developing. It was so scary and I had
vision of having to go back to surgery. The next 24 hours was horrible as they
worked to get my fever down. The doctor ordered a chest x-ray to check if there
was fluid on my lungs which could result in heart failure. It was so painful to
sit up and be moved around for the chest x-ray, and thankfully it came back
clear. By Sunday night I was feeling much better. That night I was able to see
my baby again and feed him for the first time and communicate with everyone
that had been trying to get in contact with me or had visited during the last
24 hours.
By
Monday morning I was finally able to have the catheter removed as my urine no
longer had blood in it. I was able to get up out of bed and have a shower with
the help of the nurse. In the shower I saw Battle wounds. |
Me and my blessings |
To my surprise pathology results of my placenta and uterus indicated
that I actually had placenta percreta, as the placenta had started bulging
through the uterine muscle, Doctor Steven Scroggs and the doctor at my 8 week
check confirmed this. I have now been given the all clear physically (although
I do still have pain at the incision site), however it was evident to the
doctors that I am suffering some degree of post-traumatic stress disorder. I am
grateful that I had the best outcome possible and I am so thankful to all the
medical staff involved in my case.
Three months on from the birth of Noah, I was still struggling to feel like his “mum”. Yes I carried him for 35 weeks but I was so disconnected from the pregnancy and the birth that I just feel like I’ve been handed a baby. Something that I really wanted to do this time around was breast feeding, however due to believing that I would end up on life support, me being in the ICU and Noah being in the NICU, I asked in my birth plan not to breast feed him. When we got home I did try to breast feed Noah, however he did not latch properly and I did not know who to ask for help. I recently decided to try to re-lactate to breast feed Noah to help me feel more like his mum, to bond with him more and to see if it will help with his colic. So far I have been able to pump colostrum and milk, Noah is also latching onto the breast and I am succeeding at re-lactating. Since Noah has been getting my milk he has been much happier, his colic has disappeared and he is sleeping through the night. I am also feeling much more like his mum.
Dad and Bell, helping with Noah's Feed |
I am now using my qualification in Health Promotion to raise awareness of the condition and help other women that are diagnosed. My goal is to attend the first International Hope for Accreta Foundation Conference to be held in Tennessee later this year. Please read more about my cause by visiting the link below and donate if possible, every little bit counts. http://www.mycause.com.au/page/simoneshopeforaccreta