Sunday, December 16, 2018
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Walking With You – Waiting

“Walking With You” was created by Kelly at The Beauty of Sufficient Grace to help support those who have lost a child.

Together we share our stories, helpful information, scriptures, encouraging words, prayer requests, and more. To learn more and/or to join, please visit Walking with You.

Waiting

…we are sharing our experience after we heard the news that changed our lives. If you are joining us for the first time, or if this topic doesn’t apply to you…please share part of your journey anyway. I know the Lord will use our stories to encourage those walking this path. If you are a mother who has heard the words incompatible with life, what happened next for you? Share about the waiting if your journey continued. How did you walk that path? What were some of your feelings? What did you do to form lasting memories? What were your struggles? Things you found comfort in?


Amniotic Band Syndrome

I spoke of this briefly in this post: The 5th Belongs to Calvin: Calvin’s Life, when amniotic bands were found in the sac that was supposed to be protecting my baby. It was a Thursday afternoon, the day after my 2nd prenatal appointment, when I had first heard the beautiful sound of my baby’s heart beating. Louie picked me up from work to take me to the ultrasound appointment. We were filled with excitement because we would see our baby again. I was going to go alone because Louie had a Flash workshop to attend later that evening, but he decided to go because he wanted to see the baby, too. He would just leave early, and I would take the bus home if the appointment ran long.

The ultrasound tech remembered me because of my double uterus. I remember laughing with her and Louie because the baby wouldn’t wake up and move into a position she needed to take certain measurements. She would prod and press on my belly and have me cough. I had to have both the internal and external ultrasound (you’d have thought I would’ve been used to the wand because this was my fourth ultrasound with this pregnancy, but it was still very uncomfortable).

Then another ultrasound tech came in, and the first said that sometimes if the baby won’t move for one, it will move for another. This second tech was not as jovial, and looked very serious. Then she had me empty my bladder, and while I was there, I heard the first tech speaking with someone in a serious tone, saying “I discovered she had a duplicate uterus…” I decided to stop listening. The new tech took some more pictures. I saw her take pictures of the baby’s hands and feet. I saw her type “AMNIOTIC BAND,” and I was confused. I didn’t know there was such thing. Then we did the blood test portion that factors into the AFP screening (for Trisomy 13, Trisomy 18, and Down’s Syndrome). Then she left and Louie and I were waiting and waiting and time kept passing. I told Louie that he could leave for his workshop, but he chose to stay.

Eventually, she came back and told us to go to the waiting room, and the doctor would talk to us. While were in the waiting room, we heard the the first tech say, “Thank you for taking that case. I knew something was wrong.” I was scared. So was Louie. We decided to move to the other side of the waiting room. It seemed like too much to hear without any answers. I thought that maybe something showed them that the baby had down’s syndrome.

The genetic counselor, Kati, brought us into her office, and told us that the tech saw amniotic bands, and proceeded to explain that amniotic band syndrome is characterized by pieces of the amniotic sac breaking off into sticky strands that can wrap around the baby’s body parts. Sometimes they leave marks that look like tight rubberbands, sometimes they cause amputations. The tears flowed freely and heavily then. I had horrible visions of bands causing decapitation. She continued to say that commonly, fingers and limps are amputated, and that it looked like the baby’s right fingertips had already been amputated. She explained that there is no known cause for this. That it is not genetic. That there was nothing we did or did not do to cause it. But she still took a family history, just to be thorough. She wanted us to get a second opinion from the radiology department and would call us as soon as she could get us in for a Level II ultrasound.

After we left her office, we sat in the waiting room and cried some more. Louie overheard her speaking to a colleague, wondering if she was too harsh or did not approach us gently enough. We walked to the car. We sat in the car. Then Louie started sobbing. I had never seen him cry so desperately. We cried out together, asking God to protect our baby.

Our families came that night to be with us. And Louie’s parents went with us to the ultrasound appointment the next day, after which we went to meet with Kati and then the perinatologist. Kati told us that the radiologist said the baby’s fingers were in fact unaffected, and that our baby did not have any bands wrapped on any part. The perinatologist then came in and spoke to us of the risks. He told us that they did not know much about it. That normally it is not found until after birth, when the effects are visible. That when it is found early on, the majority of parents choose to terminate. We asked how many bands. Three. One in front of the baby’s face. One by the right arm. One by the left leg. There was nothing they could do. The bands could not be removed. We were offered the option to terminate or to wait and continue to monitor the bands. We chose to wait. Our next appointment was scheduled for March 4.

Praying, Hoping, and Planning for Life

With each week that passed we were grateful that we were closer to the baby having a chance to survive outside of my womb, and away from the threats that my body created. We relished in looking at the week by week developmental descriptions. I did my research on amniotic band syndrome, and after hearing the positive screening for Down’s Syndrome, I researched that, too. I wanted to be prepared to take care of my baby and understand the needs that came with ABS and Down’s Syndrome. Of course, there were times when I would be overcome by fear, worried about my baby, scared of what this tiny little life had to face inside of me.

Each night we prayed for our baby. I prayed on the way to work. I prayed on the way home from work. Each time I thought of my baby, I prayed for healing. I prayed for the bands to disappear. I prayed that my baby would be unaffected by them. That, if it was His will, I would be able to bring this baby into this world, and that Louie and I could raise our child. Louie and I would speak to our baby, urging our little one to stay away from the bands.

We chose to cling to hope, and continued to make our plans to move back to Vallejo and live with his parents during my maternity leave. But we were cautious, maybe in a subconscious way. We only bought our baby two things, a stuffed penguin and a stuffed hippo ,which we bought on Black Friday (it sounds so terribly ominous now, doesn’t it?). We bought these dolls just a few days after learning I was pregnant. This was before the spotting and cramping and threatened miscarriage.

On February 25, the day before my birthday, I had my second prenatal appointment, with a doctor I hadn’t met before. She reviewed my file, talked to us again about the amniotic bands, about the sac holding my baby coming apart, and the high risks of my pregnancy. It was like being told all over again. Then, when she couldn’t find the heartbeat right away, I just thought my baby had died. My baby was dead. Then she found it. And she said it was fine. And we could make my next prenatal appointment after my ultrasound the following week. This made me uncomfortable because it made it seem like she was expecting us to change our minds or that something would go wrong between now and then. Nonetheless, I was happy on my birthday, knowing that my baby was alive, enjoying the flutters of life I had begun to feel inside me.

That weekend, Louie felt movement for the first time. I would hear the jealousy when I would tell him I could feel the baby move, but he could feel nothing when he placed his hand on my belly. That afternoon, His eyes and his smile were so big and bright, and he had such excitement and joy as he laughed at this new connection with his baby. It was our last weekend with the three of us altogether.

The Last Day

Wednesday was my ultrasound day, and I felt so overcome that morning that began weeping as I lay in our bed with my hand on my belly. I hadn’t really felt the baby move in the past couple of days, but I didn’t think too much of it, because there isn’t a whole lot of punching and kicking at that stage of pregnancy. I do remember noticing on Sunday that I had been sitting in the same position on the floor for a really long time, but I didn’t feel the usual ache and need to adjust my position. The light shone through our blinds on me, and though I would have normally seen it as a sign of hope, I didn’t. Still, I prayed and longed for the best.

We had breakfast. I ate eggs, and I didn’t throw up like I usually did. On the way to the hospital, Louie told me that my hands were ice cold. We went to our appointment, and the ultrasound tech took some preliminary pictures, and asked us if we wanted to know the baby’s sex. He offered to put it in an envelope that we could open up when we got home. I couldn’t really see the monitor, but Louie and his mom were watching. It was quiet. I could see numbers in the corner, 15 wks, 16 wks, 17wks, and I thought it was weird that they kept changing. Then the radiologist came to take more pictures. He said that the doctor would talk to us about it. I asked the tech if we would get a picture from him or from the doctor, and he just said the doctor would talk to us.

The walk to the perinatal diagnostic center was long and cold. We sat in the room with the perinatologist. She asked us if they told us anything, and we said no. I assumed that maybe one of the baby’s limbs had been amputated. She said, “I’m sorry, but the baby has passed away.” She told us that he had birth defects that babies generally don’t recover from, that he had body wall complex. Louie asked about ABS, and she said that they are related. That there is something about the amniotic bands that is linked with the birth defects, that it’s a very complicated relationship and interaction.

Then she said we had to get the baby out, and gave me the choice of scraping everything out (including my baby) or being induced. Because I could not say, “Just leave my baby in me, and let me die, too,” I chose induction. She said it would be best to do it that night, so I went home to pack up some things, forced myself to eat what little I could swallow down, then left to return to the hospital, surrounded in a haze of anger, despair, guilt, and disbelief.

0 thoughts on “Walking With You – Waiting

  1. Hi-

    I am so sorry for your loss.

    My daughter passed away in December because of Limb Body Wall Complex. Her case was due to severe amniotic band syndrome as well. We have a website set up for support, where we would love to have Calvin’s story, and also a private facebook group of moms who have carried to term with this diagnosis. We would LOVE to have you join our group!

    1. Sarah, thank you. I’m so sorry for your loss, too. I just stopped by your blog and read Beatrix’s story. I love your conviction and wholeheartedly agree with your choice to carry to term and treasure your time with her. I’ll be in touch with you about the website and group. ♥

  2. I’m so sorry. It must have been so frightening not knowing what was going to happen with the amniotic bands. I wish you still had your precious baby here.

  3. I’m so sorry. It must have been so frightening not knowing what was going to happen with the amniotic bands. I wish you still had your precious baby here.

"Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen." (Ephesians 4:29)

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