BUILDING OUR FAMILY
My fiancé, José, and I have been dating since summer of 2016. My first daughter was about 6 months old when we started dating, and he brought two girls to the table, making us a very blended family of 5.
We have been engaged to marry since New Year’s Eve 2017, and our wedding date is set for October 2019. Last June, we were surprised to find out we were expecting a baby! Though this pregnancy was certainly not planned, we were excited, especially since we would have an additional flower girl or ring bearer for our wedding. The excitement in our hearts grew as we started to imagine our lives with our fourth and final child. With three girls, we were hoping for a boy, and José’s friends would never let him live it down if it was another girl.
At 12 weeks, our care team offered the genetic screening test and the option to know the sex of our baby. I only wanted to know the sex, and I remember thinking, “sure, if the genetic screening comes with it, I guess we’ll take that, too.” With a simple blood draw and an ultrasound, our results were processing.
LEARNING THE DIAGNOSIS
At 14 weeks exactly, I got the phone call from my midwife, and I’ll never forget where I was and what I was doing. Time stood still for that 30-minute phone call; and I’m telling you, the world stopped spinning. My midwife was amazing in explaining as best she could the possibility of what our results meant.
She explained that the genetic screening is just that: a screening. The results only give a probability of the potential for genetic abnormalities. However, our results showed a possibility of only one abnormality, something called monosomy X, or Turner Syndrome. These results plus the imaging from the ultrasound at 12 weeks that showed an enlarged cystic hygroma gave us a high chance of monosomy X.
Over the next few hours and days, I found myself researching this unknown genetic abnormality. What does this mean for my child? What about the rest of my pregnancy? I gathered questions, and I wrote them down. Meanwhile, my midwife worked quickly to get us seen the next day by a specialist.
LEARNING OUR OPTIONS AND GETTING A SECOND OPINION
The specialist explained to us that we had a few options, but none of them were good. One of these “options” was abortion, but it would not be considered a medically necessary abortion. Due to the fact that some babies survive with monosomy X, insurances and physicians in a hospital will not perform abortions in these cases.
Very quickly, my fiancé and I got a feeling that this was not the doctor for us. It seemed as though all she cared about was whether or not I wanted further testing like an amniocentesis. As soon as I explained to her my concerns with further testing when we know most likely what the diagnosis is, she somewhat dismissed us.
She offered to have us come back in 6 weeks for the anatomy scan closer to 20 weeks, “if we made it that far.” I declined to make that 6-week follow-up appointment, and I immediately called my midwife and begged for a second opinion. Luckily, the second opinion was much more supportive.
No different information was provided about the likelihood of fetal demise for our daughter, but we were given support—and that’s all we wanted. José and I were happy—well, as happy as we could be. This doctor wanted to see us every 2 weeks to monitor the cystic hygroma and watch for hydrops fetalis.
CARRYING AND MEETING OUR DAUGHTER
Over the next several weeks, our visits became more frequent as her condition worsened. She developed hydrops fetalis, and they believed she had dandy walker variant, which is a brain malformation where the cerebellum is not formed properly, as well as two different heart conditions that would require surgery immediately after birth—if she survived to that point. Every week, they looked at us like our decision to continue the pregnancy would change, but every week we were just happy to see a heartbeat.
At 22 weeks, our checkup revealed that the umbilical cord was not functioning properly, and our daughter’s heart rate was fluctuating. I knew in my heart that it wouldn’t be much longer. I decided to get all of our affairs in order, and I made sure I had a chaplain that would be able to baptize her. I lined up a photographer from a not-for-profit organization. The following week, at 23 weeks and 4 days, we were given the unbearable news—our Camilla Grace had gone to be with Jesus.
We received this news on a Friday, but we chose not to go into the hospital until Monday to give us time to process and be alone. On Monday, we drove to the hospital hand-in-hand, loaded down with personal items and cozy blankets to make it feel more comfortable. When we got to the labor and delivery floor, a nurse greeted us promptly and brought us back to our room. We had four different nurses over the next 2 days, all of which will always have a special place in my heart. Their words of comfort, the silence they provided for me to just be in the moment, and the occasional touch meant the world to me. The induction process was pretty slow at first, but it picked up around 5pm on Tuesday. At 12:56am we were given the pleasure of meeting our angel—Camilla Grace. Not many people can say that they have carried and delivered an angel.
Every Moment was worth it
Every moment of pain and sadness, from the time we found out about the diagnosis until the second I delivered our daughter, was all worth it once we got to hold her. We chose to take as many pictures that we could of her, her feet, and her with us. We also had a small baptism for her that morning with all of our immediate family. Over the next couple hours, our family said their goodbyes, and then we had our time alone with her. We buried her the following Monday, with our closest friends and family by our side.
My decision to carry Camilla Grace to term has changed my life and that of our families. From the moment we found out, my view on life completely changed. Now I look at life as a gift, a true gift. I look at my daughters as perfect gifts—every hair on their body is perfectly made.
Until one goes through a loss they don’t truly understand. I had friends who had lost babies in the past, and I would simply provide my condolences with words, but I never knew the extent of their pain--until now. When people give their words of condolences to me, I don’t want to hear it, and I wish they wouldn’t say them at all.
Instead of saying sorry for your loss, please ask what their child’s name is and use it as much as possible in the next hours, days, weeks, months and years. Please don’t forget my baby. Say her name as much and as often as you can, because for me and my family, Camilla Grace will always be our baby.