Welcome to the Blue Butterfly Blog

Thousands of families suffer in silence from the loss of a pregnancy or an infant. My struggle is just beginning. I carried twins to term knowing that only one would survive. This is the story of my journey through shock, devastation, grief, anger, and hopefully someday acceptance. I know that other families are desperate to know that they are not suffering alone. This is for them.

Friday, November 18, 2011

The First Few Hours

We've all been to funerals. You mingle with other mourners, hoping that your presence will comfort the bereaved. Sometimes there is a meal to nourish your body as well as your soul. Then the crowds disperse. I've often wondered what those first few hours and days are like for the wife who just lost a husband, the child who lost a parent, or even the parent who lost a child. What is it like when you are completely alone?

While we knew our baby was still alive, Brad and I still experienced those first few hours of complete agony and loneliness. We were in shock, absolutely desperate to wake up from the nightmare we were both convinced we were trapped in.

But there was no waking up; this was real. Like a mourner, we each reached out for something to comfort us. I fully admit that had I not two little lives inside of me, I would have headed for the strongest bottle I could find. But, that maternal instinct, which up to this point had been some fabled thing my friends told me would happen, allowed my better judgement to prevail.

All I knew to do was sit outside. For some reason, the weather was absolutely beautiful. It was probably 70 degrees and the sun was shining down on my darkest day. We both just sat. And cried.

Brad somehow remembered that the doctor had called our baby's condition skeletal dysplasia. He started to look it up on the Internet. Finding information helps you to understand what the doctors are telling you. But, he couldn't find anyone else that was in our position.

It's hard to recount all of the thoughts that ran through my mind. I felt like I was a terrible person because I couldn't even mother two healthy babies. It had taken about three years to get pregnant in the first place. The endless months of disappointment wears you down and makes you feel so incompetent. Especially when all the tests say that you are fine. So, to compound that insecurity with this failure was a huge blow.

Rationally I knew that our baby's condition had nothing to do with Brad or me. Dr. Amburgey assured us that nothing we did or did not do caused this. It was all a genetic mishap. But try telling a desperate mother that. We didn't do anything to cause it, but there's absolutely nothing that we can do to fix it. The only thing that made it real was looking at the ultrasound pictures. There was no doubt that we couldn't help our baby.

Our healthy baby girl:

Our baby boy - note his curved spine and his head shape:

As we sat on the patio, we tried to figure out how to tell people what was happening. Our families knew how bad we wanted these babies, and we knew they would be heartbroken. My girls at work were so anxious to know if we were having boys or girls. Were we ready to shatter everybody's hopes?

A blue-headed vireo suddenly appeared in our yard. Brad and I are big birders and this was the first time we've had one of these pretty little guys in in our trees. He was like a harbinger of peace and comfort. The world was still spinning around us though we were frozen in despair. It was time to tell others.

I sent a simple text message to my friends:

One baby is not gonna make it. Problem with skeleton development. No room for lungs and fluid on brain. We're pretty devastated. Please tell people so I don't have to. Not sure what's gonna happen at this point. It might die in utero but if not it will die when it is born. But, other baby looks okay and is a girl.
 I sent a similar message to my sisters-in-law. I couldn't actually speak.

The first person to call was my friend Jen. Jen is the strongest person I know. She lost her son when he was two weeks old and was diagnosed with cancer very shortly thereafter. We celebrated her being five years cancer-free last March. I hesitantly answered the phone but could only mutter hello. She told me that Brad and I were stronger than we even know and we will find that out. I didn't feel strong, but I knew that she was speaking from experience. That was the first time I didn't feel like I was completely alone.

It was finally time to tell the families. It was after five o'clock; they'd be home. Brad went inside to talk to his mom. He talked to his dad later and gave him the details. I called my parents and my dad answered. I tried to start a normal conversation, but then I had to tell him. I said, first of all, one baby is okay. But, the other baby isn't going to survive. I told him everything I knew up to that point, which wasn't much. I also spoke with my mom. I told her about the selective termination option. I couldn't actually say the words. After years of dreaming of being a mommy and daddy, I could not believe that the idea of ending one of my baby's lives was even on my mind. But, I told my mom, we have to do what is best for our healthy baby. Both of our families vowed to support us no matter what. Oh, and the other baby is a girl, we got to tell them, almost as an afterthought.

Before you stop reading or get too upset, we did not terminate our baby boy. It was not the best option for us or for our healthy baby. We are very happy with our decision to carry him on until his birth as heart wrenching as it is. Hearing that his development should not hurt our other baby was the biggest relief that Brad and I have had so far.

All that being said, I learned a valuable lesson, even within those first few hours. You truly do not know what you will do until you are faced with a terrible decision. Ohio law has just made it illegal to terminate a fetus after 20 weeks of gestational age. Most women do not get their first ultrasound until 20 or 22 weeks. It is too late for them if they find out that something fatal is developing in their baby. I thought I knew my personal stance on termination. But, if I only had one baby and he had this condition, I do not know if I would have the courage to carry him to term. I just do not know.

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