ANGEL….that is the name that she was given by my then 6 year old Mia, the big sister to be. I had names in mind for her, one was a favorite but decided to go with Mia’s choice because she had said that her little sister was now our own Angel in heaven watching over us.
My pregnancy wasn’t planned. In fact, I was still taking my birth control pill despite a 3 day lapse because of prescription issues in the beginning of the month and didn’t realize I had missed my period for over a week. Nonetheless, I wanted another child. Correction, WE wanted a child together and so as the shock wore off, I found myself happy even if the timing wasn’t right. I had been with my boyfriend, Tim, for long enough though our relationship was kept quiet because of messy divorce situations. We had been friends for some time, both failed in our first marriages, both already have a daughter from those marriages and wanting children was something that bonded us initially. As our relationship grew, our bonds grew in many other ways.
At the beginning of my 8th week with Angel, I began spotting.
I have experienced 3 miscarriages all together. My 1st was a chemical pregnancy at week 5, followed 2 months later with a perfect pregnancy that brought Mia into my life in 2010. Then a 2nd pregnancy ended in a miscarriage, so I just figured that there would be no heartbeat when I went in for my 1st prenatal appointment a few days later. With the last miscarriage, I had begun spotting at 7 weeks but went to the doctor and there was a heartbeat. A week later, I went to work spotting a little heavier in the morning but around noon I began experiencing severe back pain, cramping and heavier bleeding. Before, I could figure out what I should do I bled through my pants while working with a patient and ran to the bathroom just leaving the patient on the table. “Oh no”, I thought, here we go AGAIN…… ” I cried to myself when the spotting started with Angel.
Much to my surprise, there was a very strong heartbeat and she measured exactly what she should at that point. My progesterone was low and there was a small area from implantation that the doctors thought was the cause of the spotting. I was thrilled and cried in disbelief. I was put on a progesterone supplement until the 10th week when the placenta produces it on its own. Everything seemed to be going well with it from that point. I had agreed to the genetic testing which allowed me to find out the gender at week 13. The test came back at the lowest risk, even for my “advanced maternal age”, the numbers were that of someone much younger and it was a girl. I was so excited that Mia was going to have a little sister. The two of them would have been the same age difference as my younger sister and I. I had only told a few people about the pregnancy up until this point because of the circumstances. My sister was the 1st after Tim of course, my mom and Emily were the others.
My sister was with me for the 12 week ultrasound at which point everything looked as it should still, though she measured 2 days smaller than she should have. I was told that could be perfectly normal, especially since everything else looked so good. It didn’t sit well with me but that feeling was quickly pushed aside. I was able to feel her move by 16 weeks, my belly was beginning to grow a bit. I still waited to share the news. I mean I hadn’t really been open about my relationship with the majority of people around me and wasn’t really sure how it was going to go. My anatomy scan was scheduled during the 19th week. Tim was going with me to this appointment. It was the first time he would be seeing his little girl. It was something he had been wanting to experience for such a long time. He had tried for many years, multiple miscarriages, failed IVF and failed surrogacy. This might not have been the right timing in our relationship, but it was a miracle. We certainly felt it was meant to be and with everything he had come to mean to me, everything our relationship had become, it was the one thing I wanted to give him more than anything.
The ultrasound began and seemed to be going just fine, we saw her arms and legs, hands and feet, her face. It was all there, all moving and to us it all looked normal. What caught my attention was that the tech never asked us if we knew or wanted to know the sex, she said nothing about it. She then stepped out half way through and came back after a few minutes and looked at a few other things. She told us she was done but never printed out pictures. She just said the doctor would be in to see us. My heart sank. I knew none of that was normal. The high-risk doctor walked in and I saw it plain as day on his face, he couldn’t even make eye contact with me. He looked only at Tim even though he was speaking to both of us. He began to tell us that it appeared she had skeletal dysplasia. Her bones were not growing appropriately, and she was measuring small, 15 weeks when she should be 19. Her arms and legs were disproportionate to the rest of her, her chest cavity was small and abnormal. It was unlikely that it would grow big enough to support heart and lung development. He recommended further evaluation at CHOP but also said he was certain she was not compatible with life.
There are no words to describe that moment. I took it all in, heard every word the doctor said. He talked about our options and yet, there really wasn’t a choice was there. I could carry the pregnancy out with it most likely ending at miscarriage and labor at any time. I could hope to bring her into the world only for her to live minutes or hours in pain or on machines for a few weeks at most. I could terminate the pregnancy while there was still time. He left the room and that was when I began to cry. That was when it hit me, a dull edged dagger to the gut that was twisted again and again. I was able to leave and get to the car without crying but the whole way home and for hours just laying in bed holding each other and the days following the tears just wouldn’t stop. There was no choice but to terminate the pregnancy.
How could I let her experience pain? How could I risk my own health and everything else? Initially, I had opted not to go for further testing and began scheduling the appointments for the D & E. I was going to have to wait at least a week. There was a part of me, however, that decided to go for the testing at CHOP. I wasn’t sure but I needed to know more. What type of skeletal dysplasia was this? What is the risk for future pregnancies? I needed to know more before I could say goodbye to her. The waiting period was pure torture for us. I was emotionally all over the place even though I tried not to be. I had to tell my dad and brothers at this point and a few other family members and friends I was close to. I needed to know I had support, needed people to reach out and just ask if I was ok or to allow me to vent.
It was almost 3 weeks from the time we first got the news til the day we said goodbye. Testing a CHOP not only confirmed that she had skeletal dysplasia but determined it was Thanatophoric Skeletal Dysplasia and then revealed a second conditioned called Confined Placental Mosaicism. The physician literally told me I had a “weird placenta.” It was calcifying and there was only a single blood vessel in the umbilical cord when there should be two. She was slowly dying inside me as multiple organs were already failing. I walked out feeling that I was making the right decision, but I also realized that I got to spend two and a half hours watching her during the ultrasound, being with her before saying goodbye and I was given pictures. It would help in time with closure for me.
We said goodbye to her on March 23rd…one year ago today.
That time period and the time after was difficult for me. I cried more in the days between the initial diagnosis and our final goodbye then I did after. Our final goodbye felt relieving after 3 weeks of knowing and waiting. I continue to grieve til this day. It is not something you get over. I am at a place today where I can walk past the baby sections of stores without crying. I can look at other happy, healthy pregnant women and be happy for them. I can look at baby girl clothes without being sad. It is a scar that will be forever imprinted on my heart though it is not visible. I made a promise that the scar would not become a restriction. I allowed myself to cry and express my emotions as often as I needed. I knew I was not okay, I did not feel whole and that it was okay to not be. I talked to those I confided in and I was able to begin to share our story with other friends and family members. I had physical therapy treatment which not only helped with the physical issues I experienced but the emotional issues as well. One year later, I am 40 years old. I still have hope of having a healthy pregnancy. I have an amazing 7 year old daughter, my relationship is stronger then ever and I completed my first half marathon last November with the second coming up in a few days.
My Angel is always with us, never forgotten, a scar on my heart but from it I, no We….have grown.
Thank you, Emily and Josh, not only for your friendship but for allowing Angel’s story to be shared on her one year anniversary. This is a bond I wish we didn’t have to share but I am glad that we are able to be there for each other. As Mia had said when I told her about your loss, “Her Angel and Stella’s little sister can be up in heaven together and be best friends just like they are.”