Wednesday, 23 April 2014

Simone's story with Placenta Percreta, Complete Placenta Previa, and Bicuspid Aortic Stenosis


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.

Pregnant with Noah at 32 Weeks

At home I spent the weekend googling “complete placenta previa”, and “placenta attached to caesarean scar”…I read the words “placenta accreta” on my screen. I wondered what this placenta accreta was, why hadn’t I ever heard of it before, how come no one I knew had ever had this before. By Monday morning I was a mess, I couldn’t eat and I cried constantly…things did not look good, how could I survive this with my heart condition. I was able to get in contact with my obstetrician that morning and ask her all the questions I had. Doctor MacGavigan reassured me “I promise you Simone, you are going to be okay”. I held onto those words the entire pregnancy. In the early hours of the next morning, I had my first bleed. At 1 am, I called Birthing and Assessment and they told me to come in. My grandmother watched my daughter, while I frantically drove myself to the hospital. When I arrived, the nurses asked if I was still bleeding, I was so scared to check just in case I was having the “big” bleed I had read all about. At the hospital I was observed. Medical staff were already talking about me and a senior anaesthetist came to visit me, he reminded me how dangerous the situation was. Optimistically I tried to convince the Registrars that the placenta could still move, they were not so hopeful. Thankfully the bleeding stopped and I was released by lunch time the next day.

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.

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.
my incision properly and all of the bruising all over my belly and thighs for the first time. My husband and daughter arrived just in time to see me up and about ready to move to the maternity ward, hubby was so relieved to see me up and moving. In the maternity ward I was placed with the gynaecological patients as I didn’t have my baby with me. I didn’t feel like a second time mum, particularly because I had to rely on others to take me to visit my baby. Soon the weight of the whole experience hit me and I began to grieve the loss of my uterus and cervix. I was still in a lot of pain at the incision site, and in my groin area where I had bruising and the internal large haematomas. I also was extremely worried because I no longer had the urge to go to the toilet, I just had to remind myself to go to the toilet every few hours. Over the next few days I continued to recover physically and was able to walk to the NICU myself to see Noah. Noah too was improving, feeding more every day and getting stronger. Family and friends were able to visit us both and hold Noah. The Thursday after Noah’s birth we spoke with the NICU doctors and they told us it was likely Noah would be in the NICU for another 4 weeks until term. This news was devastating, but we knew Noah had to get stronger. I was discharged the next day, and to our surprise we were allowed to room in with Noah in the NICU overnight stay. The plan was to stay for two nights, and providing Noah put weight on, we would be allowed to go home. We were over the moon! After just one night, Noah put on a huge amount of weight and the doctors discharged him. We were finally allowed to go home! At home we settled into normal life again. Physical recovery was slow but for the first time in over 20 weeks we no longer had to worry about bleeding or being too far away from a hospital.


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 




My Adorable little man! 
 By Simone Pavils

2 comments:

  1. Hi there
    Glad you made it through this horrifying experience!! I was recently diagnosed with placenta percreta ( invading my bladder ). How long total were you in the hospital for if you dont mind me asking? Did you ever get your urge to urinate back? Again, I am so relieved to read a positive outcome of this terrifying complication.

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