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. 

My Adorable little man! 
 By Simone Pavils

Tuesday, 22 April 2014

Lisa and Alex's Story - Placenta previa, Placenta Percreta, and low amniotic fluid.

My accreta and NICU journey began when I fell pregnant again within 3 months of giving birth to my second son. I still dreamed of having a v-bac, natural, drug-free birth experience. I decided to go to a different hospital this time, one further away, but with an excellent midwifery program. We found out I was expecting another son at the first 9 week ultrasound. I joked that we would try for a girl the next time. Everything was fine, I had minimal morning sickness and no other problems. I had an ultrasound at 20 weeks and was asked to come back to get better scans of the baby’s heart as he would not turn around and the pictures were unclear. I went back at 23 weeks for another check-up. In my examination with the midwife and doctor, the doctor was concerned that she could feel the baby very clearly through my tummy. It was found that I had no amniotic fluid around the baby when they did an ultrasound, and furthermore that I also had placenta previa. The doctor told me that it was highly likely I would lose the pregnancy or that my baby would be severely disabled due to the lack of fluid surrounding him. The doctor’s advice was that I should have a medically determined termination of this pregnancy. I went through all the guilt of perhaps it was my fault for falling pregnant again so soon after having KJ, but was told that the condition was nothing to do with the timing of the pregnancy. I was sent to RHH, a hospital over 3 hours drive from where I lived to have further investigations with more experienced technicians with better equipment. It was discovered that on top of the lack of fluid and placenta previa, I also had placenta percreta, a condition where the placenta invades out of the uterus. It is particularly dangerous as it can invade other organs like the bladder, bowel and kidneys. I was told that my accreta was caused by my c-sections rather than the pregnancies being close together. On further tests, I also had gestational diabetes. I was told I had to stay at this hospital on bed-rest and not allowed to leave the ward as there was too much risk of me having a hemorrhage. They were unable to find the reason for the amniotic fluid loss, despite an MRI scan.

I spent 4 weeks in hospital, 350km away from my family, with my 5 month old son having to be cared for by my partner and my 6 year old son being looked after by his father. I saw them once a week when they managed to drive over and stay at RHM or one of the other charitable houses, for a few days.
I was petrified this time. There was no alternative but to have another operation. This time the operation would be much more serious. There was no chance of keeping my uterus, as the placenta percreta would leave it destroyed. It would have to be removed when I had the c-section to deliver my third son. It was explained to me that my third son had very little chance of survival, without severe abnormalities as he would no doubt be born extremely premature. If he survived the delivery, he would likely have muscular contractures due to the lack of amniotic fluid and his prematurity would present other issues like heart problems, lung developmental problems, brain damage, cerebral palsy, bowel developmental problems, immune development problems, and all the associated issues of a long term stay in a hospital. Many babies develop terrible conditions as their prematurity does not allow them to fight infections. A humidicrib is the only alternative to the womb, but it is not a substitute. My job would be to get as far along in the pregnancy as possible without endangering my own life. I was advised to have a termination on numerous occasions by every doctor and specialist I saw. My partner said he wanted me to have a termination as he did not want to have a child with severe abnormalities.

Every day I was approached by doctors giving me the worst case scenario. Even so, I was optimistic and determined. I had decided to have my little boy no matter what. I knew his name. I could feel him inside me, I felt connected to him. I wanted this little boy more than anything. It would be my last pregnancy, as I had been told that even if I terminated this pregnancy it would not be safe for me to have another. I said I most definitely did not want to have a termination. I decided to be as informed as possible. I had a tour of NICU, so I would know what to expect and it would not be such a shock when it was my baby in the humidicrib. I watched DVDs about premature babies and what was involved with their care. I found prem baby websites and read the stories posted by the parents of prems. I had weekly ultrasounds and noted the weight progress of the little one inside me. I knew from reading everything I could that the bigger the baby was at birth the more likely it would survive. For the first week, I had a cannula put in my arm or hand every few days. It was flushed every 6 hours. When my veins collapsed from over-use, and even the expert anaesthetists couldn’t find veins on me anywhere, my arms and legs covered in bruises, I had a procedure to put a Hickman’s Line in. This is a large drip line that goes directly into one’s heart and can transfuse a large amount of blood in a short amount of time. This was in case I hemorrhaged or needed blood during the operation. A c-section –hysterectomy is a complicated operation and I would have to be under a General anaesthetic. I would not be awake to see my baby come into the world.

I had steroid injections to help my baby’s lungs develop, these injections made me hyperactive and I couldn’t sleep for the entire night whenever I was given them. I had insulin injections before every meal, in ever increasing dosages. I put up with a month of hospital food and begged my mother to send me some care packages with home cooked meals. Her home cooking and the visits from my partner and kids saved my sanity. Visits from other relatives and friends also saved me from the boredom of bed rest. I made friends with some of the nurses. I avoided other nurses who were inherently cruel. I made lists of the doctors, anaesthetists, specialists and nurses who were constant visitors to my bedside. I wrote about some of my experiences. I wrote a Will, just in case. I waited.

One morning I got out of bed to go to the toilet and felt a rush of fluid. It was pinkish amniotic fluid. Everyone was now on alert, as they didn’t want me to start having contractions. I was 26 + 6 days gestation. Things settled down and I was constantly monitored. When I was 27 weeks gestation, I started having contractions. I was given medication to make them stop, which gave me severe headaches. I had the medication 3 times over the next couple days. I was then informed on the morning of the 24th November that the team had decided that I should have the operation that day. I was to be prepped by firstly having a procedure to put balloon catheters on my kidneys to help prevent blood loss during the operation to remove my uterus. This procedure involved putting tiny wires in through my nerves, which was very painful and uncomfortable. Not the least part of my discomfort was the masses of med students interested in the procedure, where the wires were put in through my groin. One gives up all sense of modesty and privacy when in hospital. The other aspect of discomfort was how much it hurt. It felt like someone was stabbing me with long knitting needles in various parts of my body. I also had the sensation that I was urinating constantly. Quite uncomfortable, with lingering problems of nerve pain in my left leg over a year later, which fortunately eventually resolved with many visits to my chiropractor.

Then I was taken into surgery, where all manner of machines were ready and waiting, including a machine that would recycle all the blood I lost from surgery back into my body after filtering it. The humidicrib was ready and waiting too, along with the team from NICU who would care for my baby.
After a few attempts to get another needle into my hand to monitor my blood pressure, I told the nurse to do it after I was under anaesthetic as her attempts were too painful. Then they gave me the anaesthetic and I knew no more until I woke up in recovery.

I was told that the placenta had begun to invade my bladder and that a section had been removed and repaired. I had tubes coming out of me everywhere, two drainage tubes in my stomach, a urinary catheter, and of course the Hickmans Line still in my heart, where it would remain for another week in case I had an embolism. Apparently I had only lost 2 litres of blood during the operation and the Cell Saver had worked very well, they were all very pleased. I had a horizontal scar, the bikini line one, rather than the vertical one they’d told me to expect.

I wasn’t allowed to see my baby Alexander that day despite repeated asking. I was assured by my partner and the nurses that he was alive and doing as well as could be expected. The journey with Alex began the next day when I was allowed to see him, wheeled in on my hospital bed next to his humidicrib. He was so tiny, covered in tubes and wires. I didn’t even know where his head was. His skin was translucent, I could see veins and the outlines of his tiny bones. He was so fragile. I was optimistic however as he’d been born a good weight for a prem, nearly a kilo. We were allowed to touch him, just to put our hands over him. My hand and my boyfriend’s hand covered him completely. We were not allowed to stroke him, as that would stimulate his skin too much. It was a different world to have a tiny prem baby. I had to unlearn everything I knew about my previous two babies and learn how to do it the prem-mum way. It was ten days before I had my first kanga-cuddle with Alex. It was skin to skin and then blankets tucked over us to keep his body temperature up. I had to sit right up next to his humidicrib as the wires and cords had to stay attached to monitor his breathing and heart-rate. When a prem gets too relaxed lying on their mum’s chest they can stop breathing. It is a steep and fast learning curve. You get to know the beeps, alarms and whistles very quickly. You even stop freaking out when the alarm for bub’s breathing goes off, or when his heart-rate drops…. You learn to pat him on the back gently and wait for the machine to register his heart-rate again. You learn to read his nurse notes, the medical data that shows his blood-work results. You celebrate when his TPN goes up by 2ml per hour. You celebrate again when he graduates to being tube fed your expressed breast-milk. You cry when he has to go on the machine to “vibrate oxygen into his lungs” because you’ve read that only a handful of babies survive this machine.  You cry with relief when the doctors do scans and tell you the hole in his heart has closed. You cry with relief when he has a brain scan that comes back normal. You cry when he has to have a blood transfusion and you see a huge needle in a tiny arm. You cry when he has his eyes tested and the results are that his vision is not yet affected by the oxygen that he has to be given to stay alive. You celebrate when he goes off having so much oxygen. You celebrate each weight gain and lament each weight loss. Each small milestone is celebrated. They are huge steps for one so small.

Alex is now 2 years and 3 months old as I write this. He walked at 16 months old. He talked clearly at 18 months old. When he said Mama, my heart melted. He is a completely normal little boy. He has temper tantrums. He gives me hugs. He is susceptible to lung problems and gets croup often, and we deal with it.

As for me, my body has healed as best it can. There are issues of course. You can’t go through trauma like that and not have issues. Alex still sleeps in the same room with me, or I can’t sleep. I wake up if his breathing changes as I have become very highly attuned to his patterns. I have no uterus or cervix anymore. In some ways I miss having periods as it is something that marks you as a woman to have them. It was something that helped me keep in tune with the rhythm of life, the seasons and the tides, having my moon-times. I can never have more children and that is a loss I have to deal with. I’d always wanted to have a girl and that will never happen now. And yes, I have 3 beautiful children that I am grateful for. And yes, it is still hard to give up the dream of my little girl that I will never have. There are many emotional issues, with c-sections and with accreta. Feelings that I’d let my baby down because my body did not work properly. Feelings of anger that I’d been badgered into having an unnecessary c-section with my first pregnancy that led to the accreta with this pregnancy. There are not many women who have been through this, although due to the increase in c-section deliveries the number of women who get accreta will also increase. The emotional and physical toll is heavy and needs to be documented and researched, and I feel very strongly about this. It’s not just about having the operation, it’s also about what happens afterwards, the emotional turmoil of being in NICU, away from home, away from family and support networks, about the toll that long hospital stays can take on relationships, many of which break down due to the stress of the events, mine included.
The healing journey is much longer than the accreta and NICU journey. It’s all about being gentle with myself, crying when I have to, and feeling what I do and being honest about it.
It’s confusing because I’m angry and sad and grateful to be alive, all at the same time. I had accreta. I have a beautiful little boy who is worth all that I went through and I would do it all again for him.

I’m lucky. I’m strong. I’m a survivor!  

Tuesday, 15 April 2014

Felicity's story - Placenta Previa and Accreta.

Harry and Felicity
A little bit about me first.
I live in Perth WA and have 4 children all c-sec, (15, 9 & 7) and the youngest Harry (2) is my Placenta Previa & Accreta  child. I have also had two early miscarriages before Harry.

I was 31 when at my 12 week scan I was diagnosed with a low lying anterior placenta and possible placenta Previa. My GP advised that until my next scan at 16 weeks I was to be placed on pelvic rest. This would not have been an issue except that after 10 years we were to get married smack bang in the middle when I was 13 weeks. So needless to say this did no go down well. Wedding went ahead and was perfect with a wonderful week down in Yallingup hiking along the coast to coast track (oops). At my 16 week scan nothing had changed and my doctor referred me to Kaleeya for my ante natal care. The midwife told me that she had never advised someone with a low lying placenta to avoid sex so away we went, happy with that outcome. 
Our Wedding

Time for the 20 week scan where we were advised that we were expecting a little boy – of course I thought, after 3 girls it was going to be the boy causing trouble. After my now husband left I had my first internal ultrasound. No surprises there it was definitely complete placenta Previa. Still no mention of accreta. I went home and googled trying to find out what this placenta Previa was that I was getting little information on. A lot of horror stories came up and I began to get worried. My following appointments and more ultrasounds kept confirming PP and I was still not getting many answers, It was either that no –one had minimal if any at all experience  or they just would not tell. All I got was a cheap drawing of the placenta covering the cervix. It was at my 32 week scan when I was actually told a few things by the radiologist because I asked. I know they should not tell but no-one else would. I asked about accreta and he advised that my uterus was so thin it was like a clear window and that I should make this my last pregnancy. He could not tell if my placenta invaded my uterus as it was to close to tell. Accreta was now a potential issue as well. After that scan I was transferred to King Edward Memorial Hospital for my prenatal care. It was here that the possibility of a hysterectomy was advised and everything become very real.

I was booked in for C-section 6th Feb 2012 at 37+4 and an appointment was made for me to see the anaesthetist 1st Feb.

On January 30th I was taken out for lunch by my friends and eldest daughter and had a great mini- baby shower. I came home and decided some last minute vacuuming was in order. The kids were starting the school term the next week and I would soon be in hospital. I needed to get things organised.
That night at 4am I woke up feeling wet. I turned on the light and noticed that I was bleeding. All I could think was what I have done... This is it. I have not been taking it easy and now this is pay back. I rang my husband who was at work to come home and KEMH who advised me to come it right away. The bleeding stopped on the way thank goodness and would have only have been 70ml or so but I was admitted and there I was to stay for the 7 days until my section. This was a horrible week. I missed my daughters first day at Pre- Primary and the whole first week of school. I was bored, put on bed rest for the first few days and had a bunt put in case emergency surgery was needed. I had no more bleeds whilst in hospital that week. The nurses were checking me every day to see if I had any contractions, I had ultrasounds every second day and I was allowed to leave the premises to go to the close park with my children and husband on the weekend. I was provided with an emergency beeper if I should bleed. My appointment with the anaesthetist was very overwhelming. I cried and was in shock.  It was comforting to know that they were all experienced with this kind of surgery and that they would try to save my uterus and a hysterectomy would be a last resort. He told me it was natural to be scared but things would be ok. I signed the hysterectomy consent

The night before my scheduled section I didn’t sleep. The next morning I was taken down to pre-op where I was given a spinal block ( my request) and so may bungs and drips placed in my arms. There was no central line but one in each wrist, the back of my hand and the inside of each elbow. This was the worst feeling, the anticipation of what could possibly come next. I was so scared.
In the operating theatre the first thing I noticed was how many people was there. There would have been at least 20 with all the nurses, specialists and residents, I felt like I was on display in a zoo. I looked to my right and there was the blood recycling unit. To my left was my new best friend the anesthetist. I had experienced a C-section 3 times before so I knew what to expect. After about 15 minutes I was asked if I wanted to see my son born. I regretfully declined but moments later I heard his cry and finally got to see my little trouble maker. He was taken away for cleaning and my surgery continued they were going to try to save my uterus. After another 20 minutes the surgeon learned over and said “I cannot remove the placenta I will have to do a hysterectomy” I was prepared for this and at this stage I didn’t care anymore. My son was born and appeared healthy. I accepted the anesthetist offer of a general anaethetic and that was it.

I woke up hours later in the high dependency unit. I was advised that along with the hysterectomy I had my cervix, both fallopian tubes and one ovary removed. I also had a 4cm hole in my bladder from surgery and lost 2000mls and was given 300mls back via a cell saver. My son was in NICU as he had some breathing issues (due to his small size 5.6lb) and as I was being prepared to go see him, he was brought down to me. Harry was fine and I was so relived. I finally got to hold him. With all the cords and bungs it was very difficult but I was so happy. In the HD unit I had some cold toast and jam (Yuck) and was given an iron drip due to blood loss. This can have some side effects but I did not notice any. My husband finally got to come in and by the look on his face you tell he was emotionally drained. He told me that the surgery went for four hours and that he was continuously updated on the progress. Poor love. I was transferred back to the ward that evening where I had the first chance for some sleep.

For the first few feeds my colostrum was obtained by syringe. I was then put on the pump to try to get the breast milk flowing. My son was doing well and I was trying the best I could. I was exhausted.  It was day three when I decided that I needed to get out of bed. OMG was that the worst thing I have ever tried to do, so I thought until I tried to go to the bathroom. After numerous attempts and laxatives we had success. I was now allowed real food. That week was terrible. I wanted to go home, but I had no idea how I would cope as I was so sore and my husband only had another week off work. Finally on the 13th I was allowed home. I had my staples removed however I needed to keep in my catheter for another 4 days so I would be back to have this removed later.

Things slowly improved at home. My son was thriving and I was getting physically better every day. There were days where I would over do it and pay for it in the following days however my body was healing and I was getting stronger. Emotionally I was a mess. I was fine for the first month but then I became numb to the world. My Husband didn’t matter to me anymore and my other children took a back seat. I didn’t realise at the time how low I was. I was crying all the time and didn’t want to be with anyone other than Harry. The child health nurse referred me to the Fremantle Hospital psychologist department but by the time they called and offered me an appointment we couldn’t afford it. It was about this time that I found the original Placenta Previa group on Facebook. I decided to join and suddenly there were people who had been through what I had. I befriended a few people in this group who even through they don’t realise it helped my get through that tough time. They had problems with there relationships too and I decided to bit the bullet as they say and make my self be present in my families life. I realised that everyone had issues being intimate with there partners. Part of this was unattachement and also the physical pain and subconscious memories of surgery. It took quite a long time for the healing to progress to a stage where I was comfortable to talk about what had happened and to accept things for how they are now.
Harry now 

My pregnancy was quite easy compared to some. I worked full time up until 36 weeks, and continued to marshal the children’s little athletics events. I don’t think I ever really thought that I would have a major bleed. Even though my surgery was straight forward, recovery was hard and it was a tough emotional journey for everyone involved. I decided that when Harry turned one I would book myself in for my first blood donation ever. I have since paid back my 4 units and now donate plasma every month. I also contacted the hospital and obtained my surgery records. I have only read them once but every now and them I am tempted to have another read. I never do but just knowing they're there and are based on fact not emotions is a good thing.

Thursday, 3 April 2014

Christina's Story of Placenta Previa and undiagnosed precreta

From time to time things happen in our lifetimes that test our faith. This is the story of an experience that tested mine that resulted in another glorious blessing to our family.
Family Photo, 6 weeks pregnant.

My Journey started at 7 weeks on one of my daughters birthday. I experienced my first bleed and loss of clots, one the size of a big lemon. I was standing in my kitchen, chatting away to my 2 year old son while making him breakfast. Feeling very happy with my lot, I was pregnant with our 7th baby, and very happy to be so. Then all of a sudden I felt a gush.  At first I thought that I had wet myself, not something I had done before, but I had heard that sometimes these things happen to pregnant women.  So I went to the toilet to check. That is when I discovered I was bleeding, I remember saying “oh no!” my husband in the other room heard the emotion in my voice, 
What? What's wrong?”, 
I'm bleeding, I'm losing our baby.” 

He brought me some clean underwear and pads. I cleaned myself up the best I could, and then went back downstairs.  A few minutes later a large clot fell out and I ran back to the toilet. I could see something in the clot, it was heartbreaking.  There was no way I was going to put this in the toilet and flush. Suspecting it was my baby my husband took it into the backyard and buried it.   We later found out that we had lost one of our twins.

Because it was my daughter’s birthday my husband and I took our children to MacDonald's for breakfast for a birthday treat. We knew that we would probably spend the rest of the day at the hospital and wanted to at least make some of the day special for her. I assumed that I had miscarried our baby, but because I was O neg, I needed to go to the hospital and have an Anti-D injection, just in case. By the time we got to the hospital the bleeding had slowed to a light period. The doctor took some blood to test, and we waited a while for the results to come back, when they finally did, the doctor was very surprised at how high my HCG levels were. She explained that they were really high for a normal pregnancy, let alone someone that was having a miscarriage, so they booked me in for Ultrasound the following week.

The next few days seemed like a whirlwind. I thought I had miscarried and I didn't know if I was still pregnant or not.  During the ultrasound the technician discovered a live baby and a pool of blood, a sub-chronic haemorrhage, and a space where she explained looked like another egg had implanted. My placenta was very low. She also asked me heaps of questions about my c-section scar. At the time I didn't know why she was asking me those questions (but now looking back, I do). With so many mixed feels, losing a baby, still carrying a baby and not sure what was going to happen next, it was a challenge to deal with. We have some very unsupportive people in our lives when it comes to us having children, so at that point we had only chose to tell close friends that we were expecting, since it is difficult to say with complicated, potentially dangerous pregnancies "I might be expecting, and I'm not sure if we will have a live baby at the end of this journey”. I remember clearly wanting to tell people that we were having another blessing, but then at the same time I didn't want to turn around that tell these same people who didn't want us to have a baby to start with, that we actually lost it. I remember Christmas day very clearly, I was 11 weeks pregnant and having to get through the whole thing pretending that everything was ok, putting on the ‘happy christmas’ face, (not sharing we were pregnant, as to not ruin anyone’s christmas) but at the same time, bleeding and having to keep it to myself. 

I then went on to have about another ten bleeds. With each bleed I would have to go up to the hospital to check that I still had a live baby on board, and so until I got to the point where I could feel baby moving, it was really quite stressful. People would see me at the hospital and ask why I was there, it was never a happy answer, until 22 weeks at which point the fresh bleeding stopped. I had brown, old bleeding the whole time, there wasn't a day since it started that I didn't have to wear a pad. I think during this pregnancy I used more feminine hygiene products than in my whole reproductive life!

Just when I thought things where settling down at 22 weeks I was diagnosed Gestational Diabetes  and required insulin to help keep it under control, that meant for me that I needed to test my blood sugars 6 times a day before and after eating and then injecting myself with fast and slow acting insulin 5 times a day. I really felt like a pin cushion and had bruises all over my stomach for it! From the results of my 7 week ultrasound I was put on pelvic rest, and told I had a low lying placenta and it wasn't until the 20 week scan that it was confirmed that I had placenta previa. At this point my placenta was only a marginal previa, sitting very close to my cervix but not directly over it. My doctors encouraged me by saying that most previa's do end up moving up and out of the way. We would just have to wait and see what mine would do.
19 + 2 weeks.

I was lucky I had a friend that had recently gone through the same thing; she had 7 weeks hospital bedrest, and then a c-section. So I asked her so many questions- I think in the early weeks there was hardly a day that I didn't send her a question. With 6 children at home, I wanted to prepare my family in the event that I would have a long hospital stay. I thankfully also found a facebook group for placenta previa and accreta.

To help me cope with all the stress I set myself goals to help me get through. My first was to make it to viability: 24 weeks, then 28 weeks, but my big goal was to make to 32 weeks, because that meant all being well with baby I wouldn't have to go to Hobart which was 3 hour drive away, and I wouldn't be able to see my family and they wouldn't be able to see me until it was time to go home. My husband can't drive, and we didn't have a vehicle that would make it possible to be able to make that drive, so I would be on my own for delivery and everything else. I was so thankful when that day came and passed. Also to help keep my friends and family up to date on what was happening, I set up a facebook group for my pregnancy and my baby. I used it many times during my pregnancy to ask for prayer for particular issues, and keep people informed about what we were facing.

Here is my first post for that group.
'Welcome to the group! I'm currently 32 +5 weeks pregnancy with another blessing. From my last ultra sound (a week ago) I have grade 4 placenta previa, with the placenta over my old c-section scars, which means there is a possibility of having placenta accreta. Our baby has also been diagnosed with a clubbed left foot, which we won't know the degree of until birth. I'm booked in for a c-section on 25 of June, which will make me 37 weeks, as long as I don't have bleeding before that. Otherwise delivery could be any day'.

The time between my 20 week scan and that 32 week scan seemed to take forever to come. I was hoping for good news. Earlier in my pregnancy, my doctors where happy that if my placenta moved they would support me through a VBA2C's and I was really hoping to do that. After all, I wanted to be able to have more children and I knew each c-section I had would affect my ability to have more babies. As the time progressed the placenta didn't move, and at my 32 week scan my placenta actually settled more into a complete placenta previa, and totally covering my cervix. At this point I started to ask if accreta was something that I would need to worry about. When speaking with  one of my doctors, she  didn't seem to think that I would have accreta because the U/S report sounded like that placenta was more to the back and side, and only just covering my scar. However I would have another scan at 36 weeks to give it one more check over before my scheduled c-section are 37 weeks. They wanted to deliver a little early to try and avoid any problems associated with early labour disturbing the placenta and creating an emergency situation.

Also at my 32 week scan the technician saw that it looked like my baby had a clubbed foot, but was unsure of the extent and the treatment that might be needed until delivery. The technician said my baby was sitting in breech position with her feet right up near her head. Because the placenta was sitting over the cervix she had no room to turn around into the head-first position. I was also told from this point on I wasn't to leave the area in case I had a bleed, since if I did have a bleed I would need to call an ambulance and get to the hospital as quickly as I could! In many ways this new was kind of a relief. It validated all the stress and worry that I was going through, and said “yes is this a serious condition”, which I knew already, but found hard to express to other how serious it was. We rarely see reports of losing women in child birth anymore, so there is this kind of myth that no one dies like that any more. It was also around this time that I saw a post on Facebook of a mother that died during the delivery of her 6th baby. She had developed accrete, which brought it home even more for me. 

At my next scan at 36 weeks, the ultrasound tech suggested that my placenta might be over the scar, suggesting that there might be a possibility that ‘I had developed accreta’, but as it is a rare condition they didn't think it would be very likely, however they booked out the OR for the day just in case when they got inside they discovered that it was accreta. At this scan the doctors also found that my baby was now lying in transverse breech, just to add another thing to this ever increasing list of complications! What else could go wrong…. I was about to find out. 

At 36 weeks and a few days I was sitting at home with my children crocheting when I felt a gush. I had a split second of dread and I immediately knew what it was. I had just been experiencing some Braxton Hicks for about 20 mins beforehand. I ran to the toilet to discover blood pouring out, I was home alone with my 6 children. I immediately called out to my children to get me the phone, which they did really quickly. I call the ambos straight away, and face book messaged my husband and a friend to come. (At this point I didn't have a mobile phone).

My message went like this......

Ben Mathewson
Christina Mathewson
Home now
Ben Mathewson
Do you need me home now?
Christina Mathewson
Now Bleeding
Ben Mathewson
Ben Mathewson
Im nearly there
Have you called anyone? “

One of my children ran next door and got help from the neighbour. The Ambo's arrived within 10 minutes, put in a drip and rushed me to the hospital, blood was still pouring out. Just as they were getting me into the Ambulance my husband arrived, I told him which bag to grab, and then I was off. Just as we were pulling out my friend arrived to take care of the children.  Our neighbour was kind enough to drive Ben to the hospital.  

 On the way to the hospital contractions started, I remember telling the paramedic with me that my baby was in breech, and if the placenta started coming to just reach in, grab my babies feet and pull her out!, I think the guy was bit panicked by that and told the driver to go faster. On the way they called the hospital and they prepped an OR for my arrival. I was rushed straight into theatre. Ben arrived at the hospital just as they were wheeling me into the theatre and they gave him a few seconds to say goodbye. During the pregnancy I knew there was a possibility that I might not come out of this alive, so I had told my husband a few times what my wishes were if I didn't make it through, and this was the moment where those conversations suddenly became much more real. We didn't have time to say everything that we needed to say. So ‘goodbye and good luck’ was all we had time for!

There were so many people in the theatre and it was go, go, go. Everyone had a role and got on with it as quickly as they could. I tried to remain as calm as I could, while people where putting needles into me and asking me questions. The midwife got the doppler out and tried to find my babies heart beat. She couldn't find it. I had a quick thought, and told her my baby was in breech, and which point she moved the doppler and was able to find her heart beat, the whole room breathe again. People were rushing all over the place- one doctor was asking me questions, while another started waxing me, another did a speculum. It was all systems go! At this point I knew I was probably having a hysterectomy. The last thing I knew I was asking the date so that I would know when my baby was born. Little did I know at that point that actually being able to see my baby was critically uncertain.

Due to the fact that I had eaten recently that day, they had to prevent the food in my stomach coming back up and choking me, so when they put the general anaesthetic over my face, and the nurse had to put her hand over my neck while I went to sleep.  I had the feeling of being strangled, I knew the only way to get out of the feeling was to breathe as deeply as I could, and get to sleep faster. 

Then all the action happened.  Marcella was born shortly after putting me out, she had an apgar of 4, but shortly picked up and moved to recovery in the NICU.  Marcella Daphne Providence was born into the world 7 pounds, without sign of club foot, and perfect in every way, entirely unaware as babies are of the chaos around her. 

After about 5 hours of waiting my husband posted this under my name. 

'please keep praying for Christina. She is in hospital now. More news to come soon. (Ben)

Then work began on me- to save my life. My first operation took 9 hours. Once Marcella was out they discovered that I did indeed have accreta, but I was bleeding so much it was hard for them to see where the placenta ended and the rest of me started. They only had their hands to help guide them, feeling and grabbing what they could. They closed me up and sent me to the Intensive Care Unit. In the ICU the doctors were concerned because my haemoglobin levels keep dropping, which meant I was still bleeding internally.

 At this point it was around 1am and they decided they needed to take me back to theatre. The hospital tried to get a hold of my husband to let him know what was going on. At the time our phone started to have issues, and we were missing lots of calls. In the end the police were sent to my house to give him a message that he needed to call. He was in a deep sleep after finally getting all our children into bed for the night.  He woke with a startle to find a policeman standing at the end of our bed firmly grabbing his foot to get his attention. My husband later told me the interaction went something like this: 

'Sir, SIR, it's officer.... such-and-such here. I need you to wake up sir!'
'What!? What?! Who are you?'
'I'm officer 'such-and-such' (he found out later it was about 1 o clock and STILL doesn't remember his name) 
...and It's very important that you ring the hospital'
After stumbling, bleary eyed to the phone, and after the officer had repeated the number several times until his brain could comprehend it, my husband rang the hospital. 

'I think that you need to come down here. We are doing all that we can, but your wife has lost a lot of blood and she might not survive'
There was no way he could get a babysitter at 1:00 in the morning.
'I'll come as soon as I can'. He said. 

They informed him that they were having trouble controlling my bleeding and they were not sure I would make it, and that he should come and say his goodbyes. He was finally able to get to the hospital at around 6am and when he arrived they told him that I was stable, they had stopped the bleeding but I was not out of the woods yet, and would still be in theatre for another few hours. Distraught, he rang the hospital chaplain, who prayed over me, that I would live.  My husband said I was very grey looking and had tubes protruding from everywhere, including a machine to help me breathe.

During that second trip to OR they opened me back up and that is when they discovered that my placenta had in fact eaten through my cervix and had attached to my major arteries and my urethra, and when they did the hysterectomy they removed the uterus up to just below one c-section scar, leaving my cervix in place. So now they had to remove the placenta from my urethra and reattach it back into my bladder and remove what was left of my cervix and the surrounding tissue. This time they packed my body using chemicals to help stop the bleeding. This took another 9 hours.

The next day, I was still bleeding internally and they had to work out why. To do this they made a cut into my groin area and inserted a catheter with dye going up into my urethra and down the other side putting dye into my bladder, where they were able to find an area in my bladder that was bleeding due to the damage done by my placenta. The urology team were then able to go in and fix that as well.  My next trip back to the OR was to remove the packing, with fingers crossed that I didn't bleed any more.

Marcella's first bath.

While I was on life support the staff cared for Marcella in the  NICU and told my husband to take pictures of all of all my baby's 'first' things, first baths, first cuddles etc, so that I could feel part of her story 'if I survived'. At this point My husband was overwhelmed. And as much as he loved this little baby, he wanted to know that I would be fine too. By that evening, and after many tears in private places they were able to assurance him that they had things under control, which eventually prompted the update our facebook group and friends:

Hello, it's Ben here again. It has been a very difficult day today, but I want to say thank you for everyone who prayed. I got to the hospital at 6 a.m. and the doctors gave a less than 30% of her surviving. She was in a critical condition. Right now, it looks like they have isolated her bleeding problem and they are feeling much more confident she will pull through. With your prayers and friendship, she has and will pull the rest of the way through, and my very disturbed spirit feels much more at peace now. There is still a small chance she will bleed again so the doctors are still watching her closely, but it is fair to say the battle is almost over. Thanks again. Christina and I are thankful to have such valuable friends. (Ben).”

For me the last things I remember was going to sleep in the theatre and the next thing I knew I was waking up incubated in ICU. I had been in an induced coma on life support for 5 days. The doctors had so much trouble controlling the bleeding. I had my blood replaced 4 times, using all the O- blood in the state. I used 178 units of blood and products.  The medical team had to work hard to keep me from bleeding out and dying. There was many times when they didn't think I would make it through. In recovery my doctors told me how worried they were that I wouldn't make it. He explained that it was like he was just holding me here by my heels. The doctor giving me the blood said to my husband that there had only been one other person that he had given that much blood to that survived.

Recovery was very painful. I remember waking up in ICU and having the attendants come every 2 hours and turn me. That was extremely painful, and for the next two hours I would slowly work myself back to a position that was more comfortable, only to have them come back and roll me on the other side, which again was a really painful position. That went on for a few days. I also remember waking with tubes, breathing and feeding equipment down my throat. It was rigged up in such a way that if I tried to pull it out it would make me gag and let the nurses know what I was up to. Finally it got taken out which induced a huge vomit. Then I had what I thought was a strong need to go to the toilet and poo! I just felt so panicked because I needed to go to the toilet but I could get my message out. Inside I was screaming for help: “I need to go to the toilet!!”. I think it took a while before anyone could understand me. When they finally did, someone explained to me "no, it's ok, you don't need to go to the toilet. You have a bag collecting your poo. That's what you’re feeling". Phew! finally I could breath a sign of relief I wasn't going to poop myself! I didn't have a clue how I would go to the toilet in that state anyway; I didn't even have enough strength to touch my face!

I finally got to met my baby on day 6 of her life, I could only hold her for a few minutes because I was so weak. She was the smallest out of all my children, and had a look all of her own then. Now she looks just like the other children. For me this was my first visit, for her it was her third. The NICU staff brought her down on day 2 and put her on my chest, and took pictures, at this point unsure that I would live, and were trying to create as many memories for my baby as they could. Also, it is said that skin to skin contact can help the mother recover just as much as the baby. The nurse that put Marcella on my chest said that I responded to her, by rubbing my chin on the top of her head, which I only have a vague memory of. 
First meeting of Marcella.

When I was well enough to be moved to an ICU room they changed me over from continuous morphine to button operated morphine that I could press every 5 mins to get another dose, however I was so weak from all the operations, surgery and drugs that I couldn't press that button, so the only time I got a dose of pain relief was when someone visited me or someone passed by my room. I remember the room so well. On the left side of me was a wall of windows, and I was so tired and weak that every time I fell asleep I would have nightmares and I would have to use all my might to jolt myself out of the nightmare and wake up. In many ways the whole experience was a long nightmare that I couldn't wake up from, but in the end I did.  

The recovery has been a really long one. Getting back on my feet, dealing with the experience of being depend of other for you basic needs, the extreme exhaustion from all the blood loss, my bladder healing, going home with a bladder bag for 7 weeks, wearing a stoma bag collecting lymphatic fluid from the open incision on my groin, bleeding for 5 months, long term kidney issues, dealing with the emotional side of losing my fertility, the trauma of a birth like this, not being able to breastfeed, and having the outlook of my future being changed so much. I'm glad to now be working with the Australian Red Cross and the Hope for Accreta Foundation, and being able to help other women that are experienced and dealing with a diagnosis of accreta, is helping me wake up from this nightmare and hopefully helping to give hope to others. 

Marcella, 5 months old.

Oh the flip side of this experience is all the miracles that we did see happen, for which I am very grateful, for instance: 
* Marcella in her own right is a miracle and we love her dearly.
* The obedience of our children during the time I needed them. Getting the phone, computer and the lady next door when I needed them. They did well.
* Our neighbour was home. They are regularly not home, but thankfully this wasn't one of those times that they were out and our neighbour was able to come over and help with the children. 
* Then while calling the Ambos, I messaged Ben to come home, whilst I was bleeding. I also messaged my friend to come help since I was bleeding. We had discussed early that if it was an emergency I could call her. Now here is the miracle: both Ben and my friend where on facebook at that time! My husband didn't have a mobile phone, so facebook was our only communication tool during the day. Now normally Ben would have gotten my message a little while after I sent it, but that day he got it straight away, and started running home. My friend who is also a busy homeschooling mum, happened to be on facebook at that exact moment as well, and was able to pack up her four children quickly and come. For me those are two great miracles, because I was able to go into theatre knowing that my children were being looked after and my husband was able to say a quick goodbye to me before theatre. We both had no idea that it would be nearly a week before we saw each other awake. 

As for the unseen part of the journey I was unconscious, so wasn't aware of the miracles and the prayers that were said on my behalf. 

Ben's Account of the miracles while I was under.
* The miracle of having present and available babysitters.
* The facebook group that I had set up to share our baby news, which was a good communication tool.
* The support the Chaplains gave to Ben. 
* People all over the world that were praying for me and my baby. 
* All the blood that was needed was available to save my life.
* Marcella had an APGAR score of 2 when she was born, and it quickly became normal. 
* Marcella didn't need too much help when she was born, and other than being 4 weeks early, she was developed enough for life outside of womb and only had to learn to feed.
* The skilled surgeons and medical staff, including the quick responding Ambos. 
* All the kind staff that where so nice to me. 
* All the friends and family that supported my husband during the time I was in hospital. 
* The many women that donated breast milk for my baby while I was on life support, and the women that have continued to provide breast milk for my baby. At 9 months old she is still receiving breastmilk from a dear friend, which was not only a blessing for my baby, but also myself. While I wasn't able to establish a supply due to all the trauma, it has been a soothing ointment to my hurting soul. 

Sometimes the miracles were big and life saving, and sometime seeming small like having the chaplain turn up at just the right moment to help me through an emotional breakdown, or friends turning up with healing foods like chicken broth and healing prayers and words to feed my body and my soul. A big thanks goes out to all those that have keep us in their thoughts and Prayers. 

Christina Mathewson - 31/3/14.