Where I’ve Been

I haven’t been around the blogosphere for several months now, but I promise I have a good reason for it! After the Capture Your Grief challenge, I found that I needed a little blogging break. Meditating on grief every day is a really emotionally trying exercise. Then, I got some news that made blogging in general…complicated.

I’m going to put a *TRIGGER* warning for other loss moms reading because I think I would want one. I’m about to write about a new pregnancy and a new baby.

 

 

 

 

 

 

 

So if that’s not a spoiler, I don’t know what is. Zach and I are expecting a new baby boy in August 2015! We are thrilled (!!!), but the first few months were quite full of fear. As I’ve written in the past, becoming pregnant poses a substantial risk of more loss. There was no way for us to tell until about 12-13 weeks how this pregnancy was going to turn out. Of course, even now at 16 weeks pregnant, there are no guarantees. We are very hopeful for this baby, but we are no strangers to loss. We were fortunate that we know the genetic mutations that Owen inherited from us, so we were able to test for them very early on. I underwent chorionic villus sampling (CVS) at 11 weeks so we could look for those mutations in this baby. While we waited for results, we had two very promising ultrasounds showing normal length long bones and hands with only 5 digits each. Since Owen’s long bones and hands were pretty clearly atypical early on, that gave us some relief. We got our final results at 13.5 weeks which told us this baby is free of EvC! He is a carrier, like us, which should not affect him in any way.

I had (have) a lot of conflicting feelings about pregnancy the second time around, but I think that is another post for another day. In the meantime, here’s our new little nugget:

 

baby

 

 

 

Day Twenty One: Relationship

Owen's poem

One of my midwives wrote this just a few hours after she delivered Owen. She brought it to us, along with flowers and postpartum supplies for me, the day after we got home from the hospital. When I saw the date, I realized she had gone home from a very long, emotionally difficult shift with me (I think 24 hours?) and devoted even more time to our grieving family by writing a poem to my son. It is one of the most beautiful things anyone has ever done for me. I’m not sure she realizes it, but by putting this on paper, she also helped me to have a reminder of Owen’s most special moments–I had no idea Owen reached for me as I reached for him, for instance.

There aren’t many people in my life who had a tangible relationship with Owen. Many people know him through Zach and I, of course, and experienced his life before birth, but relatively few people ever met him. It’s pretty much just me, Zach, Anika, our parents, and some very close friends. We had a few nurses who I know were impacted by us, and I know they remember Owen, which means so much to me. There’s something special to me about knowing that Anika loved Owen and saw how special he was. I am so glad that the first hands that held him belonged to someone who could appreciate his beautiful, short life.

I’m  thankful for the relationships I’ve formed with my midwives through my pregnancy and Owen’s life and death. Babyloss isn’t easy, but it is surely more bearable when there are other women there to support you. I am even more thankful for the relationship my midwives formed with my son. They protected our time with him and helped to honor his life, no matter how brief it was.

Day Thirteen: Season

Owen snow

The spring brings Owen’s birth and death to mind, but I associate fall and winter with him the most. When we went into the hospital, the weather was still cool and showing no signs of spring. When we left the hospital without Owen, it was beautiful, sunny, and warm. I told Zach on the way home that it felt like Owen had brought the spring to us.

I suppose that also means to took the winter with him. Chill reminds me of Owen’s life with us: bundling myself up and not being able to find a coat to cover my belly as fall turned to winter, traipsing all over for appointments with specialists on icy roads, hibernating with him during our January snowstorm.

We took a beach trip when I was 14 weeks pregnant to celebrate the last bit of warmth. Two weeks later, fall had fully hit with changing leaves and cooler temperatures, and we were being told that Owen (who we had just recently named and felt move) was going to die. Winter came, and we got good news. Owen might live. Winter is the only hopeful time I got to experience with Owen. It’s the only season we spent planning for his life rather than his death. I wrote his name in the snow during the snowstorm so that if he lived, I could show him that we had been loving him and planning for him since before he was born, that he was a part of our family even before birth.

Day Eight: Resource

When we first got Owen’s semi-lethal or definitely lethal diagnosis and made the decision to carry him, I turned to the internet right away. Surely, there has to be people who have done this before, I thought. I found a ton of blogs, which were a huge help, but I wanted to talk to people who were doing this now. I found a handful of online message boards for women who were/are carrying babies to term with very poor or fatal prenatal diagnoses. What a port in the storm that was. I had felt so alone, wondering why were facing this unimaginable pain, and here were people who would be doing it with me. I hated that any of us had to be there, but I was so glad for the company.

Since Owen’s prognosis was unclear, I also sought support from groups dedicated to diagnoses of dwarfism and even found a specific website for parents of EVC babies. Hearing the stories of other parents who had received tentative diagnoses gave me hope. Some of the children had not lived very long, but knowing that we weren’t facing a 100% lethal diagnosis was comforting. The EVC group was especially useful since I was able to reach out to some of the parents and discuss prenatal findings and treatment options. I also received the contact information for Dr. Philippe Jeanty, a specialist in prenatal diagnosis who had seen cases of EVC (lots of doctors, even experienced specialists, haven’t seen EVC before). He reviewed our scans and consulted with our perinatologist to verify that Owen likely had Ellis van Creveld syndrome.

After Owen’s death, I continued on in the Carrying to Term board and joined a private support group for women whose babies have died. I started this blog and linked up with other bereaved moms (you can find them on the right). I stumbled upon Glow in the Woods and Still Standing Magazine one day and breathed a sigh of relief because I had finally found others who were giving voice to this pain with such eloquence.

It was(is) a hard journey, but I was never alone. I certainly felt alone and lost at points, which I think is inevitable, but I never felt at a lack of information. I think it’s unavoidable that there will be lonely times when carrying a very sick, possibly terminally ill, baby. No matter the amount of resources or support, no one else is carrying your baby or making life and death decisions for him, but it is overwhelmingly comforting just to be accompanied on the journey.

(no photo today–again! sorry!)

Day One: Sunrise

sunrise

“The sun reached out his hand to me and touched my face. And so my healing began.” –Marjorie Pizer

October is Pregnancy and Infant Loss Awareness Month. I was vaguely aware of this prior to losing Owen since I worked in a NICU and talked to a handful of moms there who participated in various events. Now it’s my turn, I guess. I’ve decided to participate in the CarlyMarie Capture Your Grief Photo Challenge.  Hopefully I’ll be able to keep up. I’m already behind by one day, so let’s just pretend I posted this yesterday!

My sunrise photo isn’t quite sunrise. I took it at my clinic after being at work for about an hour, but it’s a wonderful image of the sun coming through a really beautiful tree outside of my window so I’m going with it. Plus, I’m not a get up at sunrise kind of girl.

Sunrise is a time that is dear to me though. When Owen was dying, we were wheeled out of the the NICU (he was in my arms) and into a Labor & Delivery room with a wonderful view outside. The sun was rising over the hospital, and I was so happy that Owen got to experience sunlight. I haven’t been up at sunrise since that time. For the first month after he died, I would set my alarm for 3:08 am (the time of his birth) and go sit with his ashes and meditate on his life, but I never really felt compelled to reawaken at the time of his death. Because I associate Owen’s death with sunrise, I always feel like he is here with me a little more when I feel the sun warming my skin.

What Happened to Owen?

We got the results of our genetic testing several weeks ago. I’m not sure how much I’ve alluded to it here, but we had a full skeletal dysplasia panel completed with Owen’s cord blood. It took a full 3 months to get his results, and there was a chance that we wouldn’t get a result at all. Not all causative genes for SRPS or Ellis van Creveld have been found, so we had about a 60% shot at getting a meaningful result.

Owen had a mutation in the EVC2 gene, which means that he officially had Ellis van Creveld syndrome. This is what I had suspected during pregnancy, but since Owen was so severely affected at birth, I had started to think I was wrong, that he actually had one of the definitively lethal short rib polydactyly syndromes.

So what did EVC look like for Owen? He fit all the typical signs pretty closely: extra pinky fingers on each hand, short ribs, congenital heart defect, and short arms and legs. Except for the heart defect, which occurs in only about 50-60% of babies with EVC, his clinical presentation was fairly standard for an EVC baby. I’m still left to wonder why he was so severely affected. This was the diagnosis we had hoped for throughout pregnancy, but it didn’t bring us any hope in the end. (I want to be clear, though. For most babies with EVC, respiratory support at birth and surgery to correct any heart defects can lead to a happy, relatively healthy child. This disease is not lethal for 70% of babies, which is pretty significant.)

Most papers about EVC cite the heart defect as the main indicator of whether or not the baby will thrive. We found out that Owen had a form of hypoplastic left heart syndrome at around 33 weeks, which is one of the most complex heart defects to repair. There is no cure for HLHS. Parents with HLHS babies are given the option for comfort care or a series of surgeries that are considered palliative–the baby’s heart is essentially rebuilt so it can function with one ventricle, but there may be the need for a heart transplant as the child grows. Owen’s case wasn’t severe and even may have allowed for a repair with two functioning ventricles, but it was bad enough that we could be almost certain he would need open heart surgery at birth. I think it was probably around this time that it hit home for Zach and me that we wouldn’t be bringing our baby home for a long time if we got to bring him home at all. Our pediatric cardiologist, Dr. Videlefsky, was wonderful to us and so compassionate about Owen’s needs. I called him the day I got induced to let him know Owen would be here soon, and he assured me he would come whenever he was needed to evaluate Owen, which is no small feat since Owen was born at 3:08 am and Dr. V lives in Atlanta (about 1.5-2 hours away from us, depending on traffic). Owen cried some when he was born but needed lots of respiratory support. He did better than the NICU staff thought he would, so he was taken to the NICU to wait for Dr. V. During this time, his respiratory status was declining, and we knew that if we did not intubate him, he would die. I really, really did not want him to go through intubation if he wasn’t going to live anyway, so we tried some stop-gap measures until we knew if he would be a candidate for heart surgery.

As it turns out, Owen wasn’t a good candidate for heart surgery. His short ribs didn’t support the development of adequate lungs, so he wasn’t able to breathe well at all. It’s ironic that Owen’s heart, while not formed properly and not well-functioning, is not what took his life. When Dr. V did Owen’s echo, his pulmonary hypertension was so severe that he most likely would not have survived the surgery required to treat his heart defect, much less the recovery afterwards. His heart wasn’t really great either, but Dr. V thought a two-ventricle repair would have been possible if Owen’s lungs weren’t so tiny. He shared that he did not think it would be in Owen’s best interest to pursue surgery. Perhaps the biggest blessing in that moment is that I have never doubted Dr. V. I didn’t feel comfortable fully trusting any other doctor that evaluated Owen, but I trusted Dr. V.

We made a decision that I never wanted to make even though I had been preparing myself for it since 33 weeks. We stopped all interventions. We made Owen comfortable and rested him on my chest. He didn’t seem to be in any pain, and I thought at least I can give him this. He knows me, knows my voice, knows my heartbeat. I can’t keep him alive, but I can keep him loved.

That’s the why, medically, of Owen’s death, and I know we won’t ever have an answer to the greater Why (nor do I think there is one). It helps me to at least understand what physically took him from us. It has been hard for me since getting Owen’s official diagnosis. I spend a lot of time running the numbers: if only 50-60% of EVC babies have a heart defect, and only 30% of EVC babies die, how did this happen to us? Why weren’t we lucky enough to only pass on a mild form of debilitating disease to our son?

Zach and I have since undergone our own round of testing to confirm that Owen’s condition came from us, and we have both been confirmed to be heterozygous for a mutation in the EVC2 gene. That confirms that we carry EVC and passed it on to Owen, as I’ve referenced before. There is no effect of carrying EVC; it is only expressed when a person inherits 2 bad EVC genes.

Occasionally when people hear Owen’s condition was genetic, they start to ask about our family histories. Surely there were signs, they think. I’m sure the impetus for this is the fear that people could unknowingly pass a lethal disorder onto their children, but that can indeed happen. It happened to us. As far as Zach and I have been able to track, we have no family history of EVC. It seems that it has never been expressed before, which just means that our relatives who carry EVC produced offspring with non-carriers or got lucky and produced healthy offspring with another carrier. It’s rare to carry EVC and even rarer to mate with another carrier. The chances that Zach and I would both be carriers is 0.000004%, but now our chances of having a sick baby are 25%. How’s that for odds? It would actually be kind of romantic if it didn’t end with neonatal death. Statistics can shove it now as far as I’m concerned.

 

 

 

PSA: There was also no test available that could have told us we were carriers before I got pregnant. EVC is too rare to be covered by most prenatal genetic screenings. However, there are some options for testing that screen for more common genetic diseases like cystic fibrosis, Tay Sachs, spinal muscular atrophy, and others. Zach and I completed a genetic screening through Counsyl to ensure (as much as possible) that EVC is the only disorder we are at risk of passing to our babies. I suppose some people may balk at the idea of this kind of testing, but I would have felt so lucky to find out I was a carrier of a genetic disease via a lab report rather than being told my baby was going to die.

Baby Loss Before and After

I’m inspired by Meghan at Expecting the Unexpected today. Some of you may have seen the series of photos that seem to have gotten popular lately of women before and after having their babies. The first photo is usually a maternity photo with a big, pregnant belly, and the second photo is the same as the first, but re-staged with the baby where the belly was months prior. To most people, these pictures are adorable. Brutal honesty: I resent the hell out of these pictures. I don’t ever seek them out, but they pop up in my newsfeed on facebook or in random places around the internet from time to time. Sometimes I wonder if feeling bitter at these types of things is something I should work on, but that’s an issue for my therapist and future me to work on.

ANYWAY!

Meghan made her own set of before and after photos as a baby loss mama and issued a challenge of sorts for others to do the same. I had maternity photos taken while I was pregnant, but I was so darn excited about this that I used a cell phone picture Zach took during the Georgia snowpocalypse and recreated it when I got home from work last night, so forgive the cell phoney quality. I may recreate my maternity photos later on because I think it would be neat to have ones with Zach included, especially the ones where he’s holding Owen’s little dinosaur shoes on my belly.

29ish weeks pregnant

29ish weeks pregnant

Five months post Owen

Five months post Owen

Putting on my old maternity clothes was not as emotional as I thought it would be, but looking at that old picture was. During all of this snow, I remember talking to Owen about it–how fun snow in Georgia is, how it shuts the whole city down. I wrote his name in the snow and took a picture, thinking that if he lived I could show him he had gotten to enjoy the snow in-utero and if he died, well…I had proof that we had always included him, always loved him.

I loved recreating this picture. While I haven’t seen very many of the slide shows Meghan linked to on her blog yesterday, I had assumed that some of them included empty-armed mothers like us. Surely, there was some acknowledgement that there are women who carry their children but don’t bring them home. Apparently, there wasn’t, so here’s to us.