Sandra's Story - Surviving undiagnosed Accreta

I had a great pregnancy. At approximately 6.30am on the 23^rd of October 1992 my water was leaking it didn’t break.  I was over due on my birth they believed as the dates kept changing. We rang the hospital and they said come in as I had Step B.  I had no contractions.  They induced me at the hospital at around 7.30am the process of contractions took a while and they put a heart monitor on my baby’s head.  After a few hours they gave me pethidine as the gas made me sick.  When it came to pushing it didn’t go well the pethidine had run out and they couldn’t give me any more as it was time to push. I pushed for 2 hours and 52 minutes (I read the report) my baby was face up and not moving through the birth canal and his heart rate became a concern. The doctor said I needed forceps and they had to give me a cut to give my baby more room. They got me all ready and I remember the force was so strong when they were pulling that the bed moved away from the wall.  Out came my baby facing me he was a chubby one with heaps of hair, Beautiful.  He was just over 9 pounds and 52 cm long. He was born at 10.52pm. Then that’s when it went downhill.  I remember them pulling on the placenta when all of a sudden I had the worse pain, I remember pleading with them to stop (I didn’t know at the time but my uterus had inverted and they were pushing it back in and it kept coming out with the placenta still attached) at this stage I became very restful, no pain and at peace.  There was a lot of movement in the room and then I remember the lights on the ceiling going fast as I pasted them on the bed.  I had surgery where they said I required 6 pints of blood. They took my uterus and stabilized me. The surgery took all night and into the morning.  The hospital didn’t have an ICU unit so they set me up in a birthing room with a one on one nurse and machines and tubes everywhere.  This was all because of placenta accreta.  Which was not known until I gave birth.  My cut was from my bellybutton to my pubic bone.  My son was taken to a children’s hospital for surgery as he had a small problem too.  He was there for a couple of days. I was in hospital for 2 weeks other complications were surgical infection, Bowel and bladder in shock and not working.  They had to remove some stitches so the infection could weep and intravenous antibiotics. I was still on iron tables when I went home.

Over the next 5 years I still had some problems because of the damage to my tummy.  I had incisional hernia twice which required major repair.  So twice for periods of months I was unable to hold my boy and on the last surgery I slept in an arm chair for 7 weeks.  My son had some minor medical problems which required doctor visits and treatment.

When my son was 8 I returned to school and worked hard and found a new career in working with children with special needs.  My son and I have been through a lot.  I am so proud of the young man that he is.  I now have 3 other boys in my life who also mean the world to me as does my son. I also have a very supportive partner.

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 27^th 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

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 24^th 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!  

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 6^th Feb 2012 at 37+4 and an appointment was made for me to see the anaesthetist 1st Feb.

On January 30^th 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 13^th 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.