AFE Survivor Angela
Our journey to parenthood has proven to be arduous to say the least with the “rare” circumstances seeming to be our forte. Some may think we should have just given up on our quest but the encouragement of our physicians made us feel like we could have the family we wanted and our difficulties were just flukes. Infertility, IVF, stillbirth, neonatal loss, miscarriage; we have been through it all but the pregnancy complications we dealt with were all leading up to a grand finale.
The physician who informed us of our infertility diagnosis greatly lacked finesse in the method in which he delivered this news to us. We knew something was wrong but finally being diagnosed was difficult to hear. At least we had options even if it was only in vitro fertilization or adoption.
IVF did come with a physical and mental toll but we were fortunate to conceive our first try. We went in for a first ultrasound and there were our beautiful little babies with their two hearts just fluttering away. Twins. The buy one get one free infertility package. At the same appointment the doctor notified us of the first of many hurdles to overcome. I had a subchorionic hematoma which caused bleeding all through the first trimester.
The pregnancy progressed but the pressure of carrying two, coupled with cervical insufficiency, proved too much on my body. At 21 and a half weeks my husband and I went to labor and delivery with some mild complaints only to discover I was in labor. The medical staff did what they could to stop it but the following day labor progressed. The new plan was to attempt a delayed interval delivery where twin A is delivered while twin B continues in pregnancy. The only thing that would prevent this is if the twins developed an infection called chorioamnionitis.
We knew the infection set in when I started exhibiting symptoms of septicemia. Both twins had to be delivered immediately. Our first born baby boy was born sleeping proceeded by his twin sister who fought for her life for 45 minutes. She was just too premature to save.
We left the hospital with our broken hearts and empty arms but we were not ready to quit on having more children. Complications arose postpartum that required multiple surgeries. One being a D&C for retained placenta in which I hemorrhaged during the surgery. I had 6 units of blood and plasma transfused post op. I thought that was a lot at the time.
While I was physically healing we met with multiple doctors to piece together what had happened. We received a diagnosis of incompetent cervix and had a plan in place to try again. This time we did IVF and only transferred one embryo which also produced a successful pregnancy. The pregnancy itself proved difficult with another subchorionic hematoma bleed through the first trimester and a cerclage stitch placed in my cervix at 12 weeks. By 19 weeks I was on bed rest. The anxiety was probably the hardest part of the pregnancy. The day before my scheduled induction and 39 weeks exactly I woke up in labor. Our second daughter made her arrival very quickly and on her grandfather’s birthday. She was a breath of new life for my husband and me.
We did not feel that our family was complete however and decided we would try on our own for a while until we were ready to do another round of IVF. Almost two years exactly after the birth of our third child we found out we were expecting again. This was our first naturally conceived child but our excitement was short lived when one week later we lost that baby as well. We made the decision to return to our fertility doctor and discussed another round of treatment. Before we could even begin we became pregnant again.
I had hopes for a nice smooth pregnancy and delivery but it ended up being the most epic. I had a lot of bleeding but no hematoma this time. We had the cerclage again placed at 13 weeks. At 27 weeks I was diagnosed with gestational diabetes. Two weeks later at a routine ultrasound the maternal fetal medicine physician discovered that our baby had developed a condition called Isolated Fetal Ascites where he had excessive free floating fluid in his abdomen. The reason why was unknown but there were several tests that we did to try and eliminate some of the scary possibilities. Most of the testing was blood work but we also underwent an amniocentesis.
Fortunately all of the results came back good and after weekly monitoring the fluid subsided and ultimately resolved by 36 weeks. We also dealt with a high level of amniotic fluid which made me feel huge and I had low platelets resulting from a condition called thrombocytopenia. Needless to say I was over all the high risk factors we were dealing with and was desperate for our baby to be full term. My induction had been scheduled for weeks and all I wanted was to make it 39 weeks. At 37 weeks exactly we went in to have the cerclage removed. Things progressed more quickly than I had anticipated after that.
Five days after removal my water broke with no signs of labor starting so the obstetrician on call started our induction. It was a very different experience arriving to the hospital not in active labor. I was in such a great mood and I said as much to everyone that I came into contact with. Everything was going so smoothly. All of my pregnancy worries were being erased. Evening came and I knew I needed rest before the task of delivering. We finally fell asleep around 2 am. I awoke 75 minutes later feeling ready to push. I shifted my body to better assess and then I couldn’t breathe and the fetal heart rate monitor dropped to nothing. I hit the call button and my room was flooded with people. The nurse put the oxygen mask on me and shortly after I lost my vision. I could hear a lot of raised voices and things mentioned like C section and seizure. We thankfully did not need the C section as the obstetrician was able to deliver our baby with vacuum assistance. I was grasping at consciousness. I did not feel my baby exit my body nor was I aware of his lifeless appearance when he was delivered. Without seeing or feeling his birth I had a difficult time processing that he had been born. There was a baby crying but it sounded so far away. I did not make the connection until my husband told me our son was crying. Our son. He was alive. That was the last thing I remembered.
When I started coming around I was confused to find myself in critical condition on the Medical ICU. Of course they don’t tell you how bad things are but when I finally got to see my husband after hours of him in the waiting room I could read it in his face. I was hemorrhaging nonstop and had DIC (disseminated intravascular coagulation) where my blood was unable to clot and the hemorrhaging was uncontrollable. Try as they may they could not contain the bleeding not even after 66 units of blood, platelets, and blood product were transfused or the failed uterine artery occlusion. Eight hours after delivery I was wheeled back to emergency surgery which I was likely not to survive having never met my newborn son nor did I get to tell my family goodbye. When I woke up in the operating room post op I just about jumped out of the bed I was so thrilled to be alive. Shortly after I was finally able to meet our baby boy.
I improved quickly after surgery. The obstetrician had prepared us for a hysterectomy but found a cervical laceration instead which she was able to repair and got the bleeding to stop. I had so many physicians including doctors from a different hospital come to talk to me. They told us we had suffered an amniotic fluid embolism and how fortunate my son and I were to be alive because this condition leaves very few survivors in its wake. This was something I had never heard of before. My husband had to Google it to learn more about it. I waited for any other explanation to what happened but none came. It was overwhelming to hear all of this had happened. Yes we were indeed lucky to be here but I still felt physically unwell.
I went on to develop pneumonia while in the hospital. That, along with the recovery of the embolism, left us in the hospital for five days. Everything hurt and I could barely hold myself up let alone my baby. I could not sit or stand or walk it was so painful. It even hurt to breath.
Leaving the hospital took a good deal of courage on my part. I wanted to be home desperately but that would mean I would not have medical staff just a call button away. I could not have done it without the aid of my husband. He was doing everything so I could rest and nurse. The most mundane task proved daunting. At first I was unable to walk from one room to the next without being winded. Weeks went by and it started getting easier. I could walk from one side of the house and by 10 weeks I could walk from one end of the house and back.
Now at 12 weeks postpartum, I still cough and breathing has been challenging at times. I have undergone testing with pulmonologists and cardiologists with more to come. It’s scary navigating the uncharted territory of amniotic fluid embolism survival. My doctors are not sure how to help me fully recover from the whole ordeal as the condition and survival are so rare. Fortunately, I have been able to find other survivors who have been guiding and supporting us with their own experiences.
When I look back, I can see that for everything to have gone so wrong there were so many things that went right when the embolism hit. I was lucky I avoided a C section and a hysterectomy. We were also in the right hospital with medical staff that made the right decisions for our care and because of this we got to leave the hospital one final time with our arms full and a deeper appreciation for all that we have.
We set out on this family building journey never knowing the hardships we would endure along the way. We are still dealing with the emotional repercussions but feel we have ended on a high note. Franklin D. Roosevelt’s words seem all too appropriate for our final birth as it is certainly “a date which will live in infamy” for our family.