Wednesday, May 14, 2014
My Full Story of Surviving Percreta
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.
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.
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......
Do you need me home now?
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.
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 54 units of blood, and 80 blood 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.
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.
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 4 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.
If you would like to help me get to their first Hope for Accreta Conference later this year, please donate at mycause. https://www.mycause.com.au/page/hopeforaccretaconference
Christina Mathewson - 31/3/14.
If you liked reading my story you might also want to read some of the other stories shared on the Accreta Hope Blog www.hfaausnz.blogspot.com.au
If you have placenta previa or accreta, increta, or percreta, and want to talk, please feel free to contact me via email. Christina - email@example.com or Facebook.