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.

Thursday, November 24, 2011

There’s Always Something to be Thankful For

Today is Thanksgiving. It’s a day when you get together with family and eat until you can barely get yourself to the couch to watch football. Ideally, you also take the time to count your blessings.

The Belly Gets Stuffed!

Until now, I have been rather sheltered from the ways of the world. Tragedy had yet to strike. My family is healthy and happy and we still enjoy the times we share together. I have always known how lucky I was and Thanksgiving was always a good time to reflect upon that.

Today, it would be really easy to feel sorry for myself. And yes, I let that sneak in just a little bit ago. But, I actually have so much to be thankful for.

I had gotten frustrated to the point where I was pretty sure we’d never conceive children of our own. I was researching adoption agencies, examining our savings account, and talking to those people I know who completed their families by taking in a child in need. Brad and I knew that we could love an adopted baby as much as our biological own. And then it happened, those two little pink lines. After the initial terror of what was really happening wore off, we were ecstatic. Then the second shock –  “you’ve got two in there!”

I would not trade one single moment of this crazy pregnancy. Yes, I would give every worldly possession, experience, and piece of my being for both of my children to be healthy, but I know I cannot.  I admit I have wondered if things would be better if I was a singleton with just one healthy baby brooding in me, but then I would never know my son.

Let me explain why this painful experience is also so beautiful.

Brad and I got to pick names for our babies. Our little girl is Poppy Jean – Poppy from my great-grandfather and Jean from Brad’s grandma. For our tiny boy, we chose a name that represented us and his purpose in the world. He is Spyder Blayne Conlin Deering. You don’t have to like it, but Spyder has real meaning to us, and you understand that if you have spent any time with us in the woods! Blayne means twin in some etymology, and Conlin represents the fact that he is our little hero. So now we have Poppy and Spyder.

Yesterday, we had our bi-weekly ultrasound with Debbie, who has to be the best of the best, to check on Poppy and make sure that the risk of early labor is still not elevated. While examining Spyder’s profile, he displayed a yawn right on the computer screen. And Debbie caught in on video! Just seeing his little mouth open and tongue stick out like a newborn baby made me know that my son is real, alive, and having experiences, whether he’ll ever know it or not.

Then it was Poppy’s turn to show off. As we looked at Spyder’s curved little legs, Poppy’s leg came swiftly into view and gave Spyder a hefty kick. We could not help but laugh – Debbie included. I might never get to yell at them for such behavior as children, but right now I know they are a very typical brother and sister.

Finally, I would be more than remiss to neglect thanking all of you. I have heard from so many people, and I know it takes courage to overcome the discomfort of an awkward situation and the distance that time creates. But, every set of eyes on this blog, every message in my Facebook inbox, and every note of encouragement is a gift. Every prayer uttered, tear shared, and positive vibe sent is like another pair of hands leading Brad and me out of the darkness that is our despair and into the light of the future, showing us that we truly can be thankful.

Monday, November 21, 2011

Thanatophoric Dysplasia - A Crash Course

I find it amazing that the friends you make in your childhood can remain the ones closest to you as you age. One of my first great friends was Bill. We have been friends since 5th grade and I graciously assumed my role as "one of the guys" throughout high school. I know a lot about Bill - his aspirations, his baseball injuries, and absolutely, his crushes.

The most important crush he ever had was Becky. She was a few years younger and was of course a threat to our single way of life. But, about 15 years later, Becky is Mrs. Bill and they have two beautiful children together.

I tell you this because Becky is not only a great mom and wife, but she is a neonatal ICU nurse and was the first person I turned to when my mind flooded with questions. I trust her and I knew she'll give me the real answers, no matter how painful. And she did.

Brad and I had been frustrated. We couldn't remember exactly what Dr. Amburgey had said our baby boy's problem was and my OB wasn't familiar with it to give us the right answers. The typical pregnancy questions like, am I gaining the right amount of weight, will I have to go on bed rest, and can the twins punch each other through their amniotic sacs, were replaced with terrifying uncertainties:

Is this hereditary?
Is it from the medications I have been taking?
What will I feel if he dies inside me?
Could his death cause me to miscarry the healthy girl?
Why exactly can't he survive?
If he does survive until delivery, how long will he live?
What will it be like if he is born alive - will he cry, will he be asleep?

Between Dr. Amburgey and my dear Becky, Brad and I have pieced together some information about our son's condition.

Our baby's condition is called thanatophoric dysplasia. Thanatophoric is a cryptic Latin term meaning death-seeking or death is coming. Dysplasia describes abnormal growth or development. My only experience with these terms was the fact that our chocolate lab has hip dysplasia - I thought it was something that happened to animals.

In essence, the baby's body is the right size, but his arms and legs are very, very small. They are not straight like his well-developing sister. Instead they resemble a telephone receiver. At our most recent visit, we learned that his head is misshapen and there is a disjoint that will not connect before birth. The fatal aspect of this condition is that the space between his spine and rib cage will not allow for proper lung development. As our genetic counselor, Carolee, explained, even if you could magically open the rib cage after birth, the lungs would not know how to inflate.

Carolee also calmed our fears that we have caused this ourselves. She said no medication or any amount of drinking or crazy behavior would cause this dysplasia. It is likely caused by a spontaneous genetic mutation. A simple error in DNA replication that occurred during the development of either the sperm or the egg, well before conception. It is just utter bad luck that the mutated zygote is the one that led to our little guy. We will have more testing after he passes to assure that this is not a hereditary condition.

Our son should live to delivery. He does not need lungs while he is safely attached to the umbilical cord and sharing my oxygen stores. I am keeping him alive and it absolutely destroys me that one day I must sever that physical lifeline. In the meantime, I am to nourish and care for him as if he will live a healthy life. I have learned that he gets excited when I eat Taco Bell.

Right now, the doctors' main focus is on our healthy baby. Because our babies our most definitely fraternal - from two eggs and two sperm in their own amniotic sacs - our son's condition does not at all affect our daughter. The main risk is that of early labor being cause by excess amniotic fluid in the boy's amniotic sac. For some unknown reason, fetuses with skeletal dysplasias run a higher risk of poly hyperamnious, or too much fluid.

That's where Debbie, our sweet, skillful ultrasonographer comes into play. We have a standing date every other Wednesday at 8 am to measure the amount of fluid around each baby. In contrast to the very first ultrasound when you fall in love with the tiny blob image and beating heart, I hold my breath until both babies are identified and their heart rates are measured. Then I wait for the a-okay on the fluids. Finally, I look at my baby boy who is unwittingly twisting, punching, and mooning his sister. I can't prevent the tears, but I think they are partly those of joy that they have each other for these precious nine months.

Delivery day is still something I cannot think about without wanting to get physically sick. I am terrified, anxious, excited, and sad. We don't yet know what type of delivery I'll have. They'll do what is best for our little girl. Our son may be stillborn or he may live a few minutes to a few hours. He might cry or he might sleep. All we hope for at this point is that we have a chance to hold him and let him feel safe and loved.

Brad and I don't need to face delivery or any of this process alone as we had thought in the beginning. We have the most amazing family and friends that have helped us through this past 6 weeks. And, our doctors and specialists reminiscent of angels. I tell them at our appointments that I am so glad there are people in the world like them.

Accept all the help that people are willing to give you. There are so many people out there whose goal is to make this process a bit more manageable. We have our OB, maternal fetal medicine specialist, genetic counselor, therapist, and family support coordinator from perinatal hospice.

We are no longer alone. We have an army of love and support looking out for our babies.

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.

Wednesday, November 16, 2011

"I'm Not Allowed to Say 100%, But"

There comes a time when a doctor has to tell you the absolute truth. For us, it was October 6th at the maternal fetal medicine department of Grant Medical Center in Columbus. My husband, Brad, and I had found out in August that we were having twins. It was a terrifying and beautiful shock. By October, we were ready to find out if we'd be playing defense against boys or girls.

In my head, I was looking forward to a day off of work, an exciting ultrasonic glimpse at our future family, and hopefully a huge cheeseburger at Thurman's down the road from the hospital. An ultrasound at a maternal fetal medicine specialist is typical for any multiple pregnancy, so I was not worried about anything. I had butterflies in my stomach (and it was too early to feel those kicks).

About an hour into the measurements, the ultrasonographer stepped out to show the images to the doctor. Brad and I glowed with the joy of seeing and hearing our babies' heartbeats, Baby A and Baby B - concrete evidence of the lives forming inside my body.

When Dr. Amburgey, a tall, brown-haired lady who spoke with a gentle voice, walked in, we were all smiles. Looking back, she didn't shake our hands, she patted by knee and walked right up to the ultrasound machine. First, she told us that Baby A's arms were shorter than they should be. So are his legs.... Okay, maybe she'll tell us he has dwarfism. Maybe he'll need surgery or a wheelchair... and there's a problem with his chest cavity. The space isn't right for growing lungs... Will he need surgery?... His head is slightly misshapen....         ... I'm not allowed to say 100%, but this will be fatal.

I don't remember much more than this. By this time, I was well within the throngs of a panic attack, crying, hyperventilating, and in a cold sweat. My world ended. I remember trying not to make eye contact with Brad. I didn't want to see his face. I've never seen him cry and I wasn't ready to. Not like this. I thought the first tears I would see of his would be at our babies' birth. Tears of joy, not absolute despair. He held it together.

Dr. Amburgey told us we had options - let the baby go to term, watching closely to make sure he doesn't affect the other baby or terminate the unhealthy baby. That's how we left it. That and an appointment for three weeks later.

Tuesday, November 15, 2011

The Butterfly

In many cultures, the butterfly is a symbol of fertility. Some would say that you become pregnant by swallowing the essence of a butterfly. Others believe that butterflies provide the luck that is needed to conceive. To me, butterflies encompass all things beautiful in this world. They are free, fluttering, and individual.

Take this photo for example. On a warm summer day, my husband and I came upon this blue common buckeye butterfly gliding and sunning with its more typical counterpart. We were struck by it.

By this time, we knew we were pregnant with twins. The individuality of these two insects so closely related hit close to our hearts. Our little ones would be siblings, but each would have his or her own little personality, passions, and potential.

It was two more glorious months before we knew that our little blue butterfly would not fly on through his life.

Right now, the butterflies that I know come in the form of little kicks and twists inside my belly as my babies practice for their lives outside the womb. My son and daughter flutter as if they are both healthy and preparing for the world. But, this is not the case. 

We will lose our baby boy. My husband and I are waiting for his birth and death like a butterfly awaits the first murderous frost. This is our story. This is our journey as we carry our twins to term, knowing only one will be coming home with us. I am not writing for pity or to make readers feel sad. I am writing in hopes that there are mothers and fathers who understand our devastation and might find some comfort in knowing that they are not alone - no matter how desolate they feel.