Thursday, 27 November 2014

Ella Lives in My Heart - 2 undiagnosed Accreta's.

The truth is, there is no crystal ball. We try our best in life to be healthy, even if we knew what lies ahead; there is something quite remarkable in the human spirit.

I had a hard time accepting 'miscarriages just happen' after our second loss in 2009 at 12 weeks. I wasn’t really even phased that day when the office Doppler couldn’t find my babys’ heartbeat. I wasn’t fazed over the next 4 hours when I went back to work and waited for my appointment for an ultrasound. In retrospect I didn’t know at that point to even be afraid. Once the ultrasound technician turned the screen away and got quiet, worry frantically crept in. It wasn't until she handed me the box of tissues and the phone so my OB could deliver the bad news that the inconsolable sobbing began.

I didn't want to wait for a third loss to be considered eligible for extra testing to find out why we had trouble staying pregnant. I can be quite determined when something is really important to me, though my normal self is quite laid back. Ironically, it was my dermatologist (who also confided and shared her own infertility story) who hinted that while getting pregnant wasn't the problem, a reproductive endocrinologist (RE) might be able to help find out why we weren't staying pregnant. I referred myself to one the next day. Within the first round of labs he found out I had MTHFR (a blood clotting disorder), and low and behold 2 months later I was pregnant for what would become my first full-term pregnancy. The only thing I had changed was that I had started taking a mega dose of folic acid. I thought we had unlocked our 'pregnancy code'. It was an amazing pregnancy, and we had a drug free birth. All was well until the 3rd stage. I started bleeding, a lot. The attending removed my placenta manually, piece by piece in the delivery room. It was more painful than birth itself. The only medication in my system at that time was a bolus of Pitocin to try to help my uterus contract to stem the alarming amount of blood loss. Never have I been in so much physical pain.

On my 32nd birthday, almost 4 weeks later there were two instances within 24-hours where I stood up and hemorrhaged significant amounts of blood. When my former OB office couldn't see me (I didn’t meet their requirements for blood loss via # of pads soaked/hour), my RE did. Sure enough I had retained placenta. I went for a D&C on my 32nd birthday, at 9 pm after being asserted onto my OB’s surgical schedule. I hated leaving my baby, who hadn't had only nursed and wasn’t bottle-fed, but we had to do what we had to do.
When I looked back at email from the time, I had, within 3 days of my 2nd D&C (the 1st was from miscarriage, and the 2nd from retained placenta); self-diagnosed myself with Placenta Accreta. My OB dismissed my concerns, and though they never bothered to send my troubled placenta to pathology after delivery, they said there was only a minimal chance of a recurrence. It wasn’t until 18 months later, when my cycle was trying to return; that I knew something else was wrong. Long story short, my cervix was scarred shut. Whether it was from the horrific manual removal or the D&C 4 weeks after my sons’ birth, I will never know. I spent a few months trying to remedy the cervical stenosis. During a hysteroscopy my surgeon accidently punctured my uterus while trying to dilate through the scarring in my cervix. We were never able to get a picture of the health of my uterus because of the puncture that day. Eventually we did, however. Ironically my uterus is heart shaped. You have to laugh at the irony here.

I had set my scopes on trying to understand what was going on so I could prove to my husband it was safe to try again. I was on a mission to have another baby. I was on a mission to prove to myself that I could do it right the next time; that my body would cooperate and things would go better the next time. My husband was very traumatized after witnessing our son’s delivery. It had been too much to see his wife’s blood spraying across the room and pooling up on the floor in the hospital and later at home. His fear of loosing his wife, and the mother of his son was palpable to him.
My son bonding with Ella.

In steps the powerful human spirit, if you want to call it that. In the spring of 2013 we found we were pregnant again. We were excited, we were scared, but we were there for each other. It didn’t take long for my son, who was 3 to bond with ‘his baby’. In fact, just weeks into the pregnancy he was certain the baby was going to be a girl. While rocking him one night we discussed baby names. I rattled a few off, but he came back with the name “Ella”.  At 18 weeks, ultrasound confirmed what my son knew.  It felt like a miracle. I had always believed I would have a daughter! I felt absolutely awful, tired and run down. I kept waiting for the 14-week mark to feel 'safe' and for the 2nd trimester energy lift I had experienced in my sons pregnancy but it never happened 

Our first kick in the gut was when we got the results of our 2nd trimester AFP screen. It was elevated. We were in pure terror for 24 hours in which time we had an ultrasound, which seemed to rule out Downs (based on measurements) and Spina Bifida. We also had a very encouraging genetics consult. Whew, we could breath again. Or so I thought. Given the news and the risk associated with Amnio we decided not to test further. In hindsight, I might have done further DNA testing, but more concerning now is the association of AFP with poor placentation. 

My new OB/Perinatologist had been toying with the idea that I might have had an Accreta with my son, and though we had no confirming pathology, we erred on the side of caution. Instead of seeing the practice midwife, I was ‘upgraded’ and was now considered ‘high risk’. I was seen every 2 weeks, and would have color Doppler ultrasound. At 24 weeks ultrasound showed no signs of an overly adherent placenta. 

Obviously, ultrasound isn't a guaranteed indicator, of which I was aware. Two weeks later I had another check and everything looked great; however, a week later I noticed I wasn’t feeling much movement. I tempered my concern with the fact that my son wasn’t super active in utero, and placated myself by thinking his sister was the same. It wasn’t until my body started to balloon up and my ankles turned purple that I called my OB office. I found myself back on the table of my OB’s office in the all too familiar position of a Doppler that couldn’t detect a heartbeat. My chin started to quiver as I walked down the hall to the ultrasound room, but I was not going to ‘go there’. I held onto hope. Remember that thing about the human spirit; I was clinging to it… desperately! Within minutes my hopes were dashed. Ultrasound confirmed my fears.

I was induced the next day. Within 6 hours my water broke. Another hour later my daughter was born. We held her, photographed her, dressed her, and tried our very best to take in every cell of her being. She was 13” long and weighed 2lbs 13oz at just days shy of 28 weeks.

As much as I tried to focus on my angel, I was holding my breath. Ella's placenta stayed stuck past the 30 min mark, the practice midwife was collaborating with attending on when to intervene.  Three coagulants were administered during that time to minimize blood loss. They started gently working on it at 60 min post delivery. The attending tried to follow the cord up and see if he could find the edge of the placenta to try to lift it away from my uterus. He talked through each move with my family, but we could sense the gravity of the situation.  An hour and a half later the blood started to roll onto the table. 
My precious Ella

 My nurses were measuring EBL and seconds later the energy in the room shifted. The photographer was booted; I suspect a code had been called because my room instantly filled with various hospital staff. I had lost an estimated liter of blood and was wheeled to the OR for manual removal, thankfully this time it was done with anesthetic! Moments before going under, another layer of fear set in. As I moved from the hospital bed to the OR table blood started gushing, and then spraying my providers at the foot of the bed. After another episode of significant blood loss they got the bleeding under control, I was back in recovery, and eventually able to spend a little more time with Ella before our final good byes. 

My Hematocrit was 24 at the post-op draw, but once the IV’s were tapered, and a ‘real’ measurement was given of my not so dilute blood, the crit was at 18. I couldn’t stand without passing out and the decision was made to transfuse 2 units.

It turns out; my placenta was completely attached to the uterine smooth muscle. This was the only firm diagnosis provided by pathology. Our loss is still a mystery, all we know for certain is that my placenta was ‘insufficient’ and didn’t allow proper gas and nutrient exchange. She had become oxygen starved. Thankfully, my team was dedicated. My main perinatal bereavement nurse and the hospital pathologist made EVERY effort to support me. The pathologist even reached out to the hospital where I delivered my son to obtain pathology from my Postpartum D&C. She was able to get the tissue slides and confirmed at least a focal Accreta.

My family has been pretty terrified by the placenta & blood loss part of things, and of course they are grieving Ellanora immensely too. In between hard hits of reality I waver in between wanting to understand why, for both Ella's loss, and for the Accreta. Many times it is a chore to take a deep breath, but in the 11 months that have followed I am finding a new me.

Once again, the human spirit prevails. I’m not sure if it is by choice or out of necessity to be a good Mom, but what I have realized going through these last 5+ years is that if we stay stuck in the shadows we can’t see the light.  I’ve discovered that the light, when shown, reveals a deeper beauty than I knew before. The light, I like to think, is my daughter shining down over me. I like to think it is her way of showing me her love. While I’ve become protective of my heart, I’m also aware that in the process I’ve become more open. My eyes and heart are open.

Ella, Mum and Dad.
Ella with a blanket I made for her.

I felt compelled to share a my history because I have witnessed beauty in sharing and 'connecting' and I’ve realized that several of the connections I have made have happened with other members of the Hope for Accreta Foundation.
Our latest Family Photo

 If you too have lost a baby or infant to Accreta,  you are more than welcome to join us in our facebook group, to talk and share with other Mothers who have angel babies.

Friday, 19 September 2014

Counting My Blessings

Christine’s Story
It was a sunny warm spring day.  The birds were chirping and the sun was shining on my face.  As I sat on my porch with my feet up, life seemed so good, but in reality, fear and concern took over any feelings of joy I had over the precious baby that was growing inside me.  At this point, I was home on bedrest after a 24 week major hemorrhage which caused me to almost deliver my son and require the first of several blood transfusions.  The fear was like something I’ve never felt before.  I knew if my baby was born this early his chances of survival were minimal and if he did survive, he would likely have serious complications and I would be left without a uterus since I was diagnosed with Placenta Accreta, never to bear a child again.  Luckily the bleeding subsided and I was sent home on bedrest with a goal of 34 weeks.

This was my third pregnancy and my husband and I both wanted a big family and always talked about having 4 children.  With this pregnancy, I began to experience light bleeding at 6wks.  The bleeding never stopped for the entire pregnancy.  It wasn’t until around my 16th week that they told me I had Complete Placenta Previa.  And during a 20wk ultrasound, I was given the news that I also had a suspected Accreta.  The MFM doctor at that moment looked at me and said “I am very worried about you”.  He went on to explain that I may need a hysterectomy at delivery.  I remember leaving there that day, crying, very emotional over the news that I may need a hysterectomy.  Those feelings quickly diminished after what the next few weeks had in store for me.

Being at home on bedrest didn’t go as smoothly as I had hoped.  After 3 more big bleeds at home, my doctor advised me I was at high risk for having a bleed that might not stop the next time. That was enough to scare my husband and me. We immediately made arrangements that I would check into the hospital 2 days later after my MRI apt to confirm the Accreta. I was admitted into the hospital at 27 weeks pregnant on April 17th. My mother took me and I cried the whole time while getting admitted. The day was a beautiful 70 degree sunny day. I dreaded going into the hospital, I just wanted to be home on bedrest so I can enjoy eating dinner with my 2 kids and just being home and sitting outside. I felt like I was turning myself into jail by admitting myself into the hospital. But the very next day of being there, I had another bleed which required another unit of blood. I then felt our decision was the best thing we did.

Around this time, my feelings quickly changed, I no longer was upset about a possible hysterectomy at delivery, I was now praying and hoping I would remain pregnant as long as I could.  Everyday was another milestone for me.  My doctor would often remind me that after this baby, I would have three children and that I needed to be alive for them so they would have a mother.  I needed to do whatever it was even if it meant taking my uterus out to save my life.

After 4 weeks of hospital bedrest and 13 major hemorrhages, doctors feared I would be faced with an emergency surgery possibly in the middle of the night (since most of my bleeds occurred then) and the proper people would not be available.  So, the decision to move my surgery up to 31 weeks 6 days was made.  The date was May 17th 2013 at 1:30pm.  They decided to schedule my c section in the Main OR of the hospital instead of Labor and Delivery.  They knew my surgery was going to be complicated and would rather the surgery take place there.  I was suppose to have balloon catheters put in to control bleeding but, we never got a chance to do that. The morning of May 17th, I experienced some mild contractions.  Looking back, I am wondering if these were caused by my nerves or anxiousness about surgery.  It just seems so coincidental that my body would start laboring the morning of my planned surgery.  After a few hours passed, I began to hemorrhage.  I buzzed the nurse call button and within minutes we had a full blown emergency in my room.  I was able to call my hubby and parents to have them come to the hospital immediately.  My exact words were ”Come now, I’m bleeding and it’s not stopping” and I hung up on them.  My mother who worked on the maternity unit for 28 years at a hospital knew how dangerous my situation was and prayed the rosary the whole way to the hospital.

I began to hemorrhage profusely and the blood was not stopping.  My nurses and Doctor ran my bed from the High Risk unit all the way down the hall to Labor and Delivery unit as I was starting to get very lightheaded.  They immediately started to transfuse me.   During surgery, my body temperature dropped to 94 degrees and blood pressure dropped to 34/16.  My uterus was ruptured and surgery went on for 4 hours in which I had my uterus and cervix removed, bladder repaired and 22 units of blood administered. My estimated blood loss was 4.5 liters. 
After surgery, I awoke in the ICU unit.  I remained there for the next 24hrs.

I quickly started to recover and was released from the hospital 5 days later.Baby Joey remained in the NICU for another 6 wks.  He was discharged June 28th, 2013 weighing 4lbs 9oz.

Everything I went thru really made me realize that life can be short and just enjoy life’s little blessings.  Everyday, I Count those Blessings.  Although, I can never bear another child, I am so grateful I am here today to be a “mom” to my 3 precious children.
During this pregnancy, I kept an online journal capturing my journey thru this stressful, fearful, hopeful and all worth it pregnancy.

Our Blessing Baby Joey, 3lbs 10oz
Joey 16 months

Joey now 16 Months on.

Johnny 5, Joey 16mths, Laci 6
Below is a link to the article written by Saint Peter's University Hospital.