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.

No comments:

Post a Comment