Day Six: Books

I read a lot; I always have. It’s surprising to me that I haven’t read more babyloss books, but it has never felt quite right. Before Owen was born, I considered reading Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life by Amy Kuebelbeck. It tells the story of parents who chose to carry their pregnancy to term after finding out prenatally that their son had hypoplastic left heart syndrome. I put it in my Amazon cart a few days after we got Owen’s probable HLHS diagnosis, but I couldn’t bring myself to actually go through with the purchase. Kuebelbeck and her husband chose comfort care for Gabriel, and even though Zach and I were heavily leaning toward choosing comfort measures only for Owen, I couldn’t bring myself to purchase a book in preparation. It felt like giving up. Kuebelbeck also wrote A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief. That book is still sitting in my Amazon cart as well.

I did read a lot of books when I was pregnant, but they were mostly mystery novels and detective stories. I read all of Gillian Flynn’s books, and even though I found them grizzly and just a little too harsh for my taste, they were a fine alternative to contemplating the choice to let my son die.

I’ve mentioned before that I sometimes feel guilty we didn’t demand every possible medical intervention for Owen. To clarify, this is not rational guilt. When I am missing him the most (and this was especially true for the early days), I would think, if we had just demanded surgery, he’d be here now. But I know that even if we had demanded surgery and he was here now, he wouldn’t have had very long with us. Objectively, I know that Owen was too severely affected to live, and forcing long-term ventilation and respiration where there were no lungs would have been painful–more painful than I could accept choosing for Owen. Still, modern medicine tells us to fix, treat, cure. We technically chose the opposite, although I don’t see it that way. To me, we did heal Owen. We chose comfort and love, and then death protected him from any pain. To me, we took on all of this grief so Owen could live peacefully.

loving and letting go

Loving and Letting Go: For parents who decided to turn away from aggressive medical intervention for their critically ill newborn

I ordered this book a few months after Owen died. It, like the others, sat in my cart on-line for weeks before I finally bought it. It was hard for me to conceive of myself as someone who turned away from medical intervention. It’s the only baby loss book I own, but I’m content that it’s the only one I need for now. Maybe someday I’ll read the others, but today I’m satisfied to belong to a group of parents who took on lots and lots of pain so their babies didn’t have to.

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Day Two: Heart

Owen heart

I took this in August when I was photographing my Baby Loss Before and After and ended up not using it, which I felt sad about because I wanted to show off Owen’s heart. What a perfect opportunity!

Soon after Owen died, I got this heart made by A Heart to Hold. It was made in honor of another lost son and gifted to us, and it weighs 7 pounds, 14 ounces–Owen’s birth weight. I love holding it, especially when I am feeling particularly empty-armed.

Today’s prompt was also inspired by E.E. Cummings poem “i carry your heart with me.” I (attempted) to read this Owen’s memorial service so it is especially near to my heart. Owen is gone from this world, but I carry him every day in my heart and in my mind. I am honored to do it but desperately sad that I must.

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.

Talking About Owen, part 2

(Background: I started losing ridiculous amounts of hair unevenly around my head at the beginning of August. I wasn’t happy with the woman who cut my hair previously, so I tried someone new. Postpartum hair loss is a thing, I swear.)

 

Her: So…were you going for an asymmetrical look?

Me: Ah, no. It’s just, I had a baby, and now all my hair is falling out. But it isn’t falling out evenly, so the entire bottom layer on that side fell out, which means it’s like an inch shorter than the the other side. Also there’s a weird spot on the top. I know it looks ridiculous. I didn’t try to make it look that way, I really didn’t.

Her: No, no, it looks fine! I just wanted to know if that’s what you were going for so I’d know how to cut it.

**general hair chatter**

Her: So, how old is your baby?

Me: Um, actually, he passed away soon after he was born.

Her: *shoulder squeeze* I’m so sorry. What was his name?

Me: Owen. His name was Owen.

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.

 

 

Talking About Owen

Someone asked me how my baby was doing last week. Naturally, it got awkward. I don’t remember meeting this person while pregnant, but apparently she had been training with a coworker of mine and had spent a day at my old office back in December. We spoke for a few minutes back then but I can recall literally none of this interaction. It’s not surprising. In December, I was going back and forth between various specialists trying to get answers about what was wrong with my baby and whether it was lethal, debilitating, or only slightly disabling. To put it mildly, my mind was elsewhere. When I met this woman again yesterday, she kept trying to jog my memory. “You were about to leave for an appointment. It was a really busy day. It was just a few days before Christmas. You were wearing a red shirt.” Nope, sorry, I replied. I usually have a very good memory for names and faces, but I couldn’t remember her. I apologized and just asked her to remind me of her name and position. She did, and I thought we would proceed with our business. But no. Of course.

“So how’s your baby doing?” Very upbeat. It would have been uncomfortable enough if it were just the two of us, but we were in a group of people who also didn’t know I recently lost a son. I hesitated, knowing I was about to drop a bomb and she had no idea. I spoke very quickly, “he died very soon after he was born.” She apologized appropriately. I thanked her. I could feel everyone looking in my direction. Pity, curiosity, confusion–all of it directed right at me. What I really wanted to say was that I had a son whose name was Owen, that he lived for a few glorious hours and then he died, that he was magnificent, but what I did was direct my attention back to work. No one acted inappropriately, but I know talking about Owen usually makes other people uncomfortable, so I moved on quickly with what we were originally doing.

To make it clear, I love talking about Owen to almost anyone. Love it, love it, love it. I can tell you about his feisty personality, his chubby little cheeks, his brown (!) eyes, his fluffy hair, his extra pinky fingers…anything, really. Ask me anything. I will talk about my baby like any other mother. I don’t even mind talking about his death, although that’s a much more intimate conversation. At the same time, not everyone is prepared to receive the news of a dead baby. I’ve had to tell unsuspecting people that my baby died before–medical providers, other coworkers, patients (not often)–but it is usually one on one, and I am usually prepared for it. I have typically readied myself to do the hand-holding required (it’s okay, we knew he was sick, yes I’m fine/it’s fine/we’re all fine, and so on).

I had no reason to suspect that the coworker I mentioned above had any idea that I had ever been pregnant or had a baby, so I was completely taken aback. She was very nice, and she didn’t do anything wrong. There are just some days I don’t feel like carrying the burden of comforting someone else while I’m having to tell them something that pains me, so I was probably a little cold or standoffish. I felt bad at first, and then I felt irrationally angry. This woman did nothing inappropriate and said all the right things (aside from being a little insistent that I remember her), but just…it is not my responsibility to help anyone else deal with this or figure out what to say! I was anticipating the need to comfort her the moment she asked about my baby, so I got my hackles up preemptively and reacted before she even had a chance to show me how she would have really responded beyond “I’m sorry.”

That’s when I realized my anger is my fault. I have always assumed I bear the responsibility for comforting the other person in these conversations, and I resent it almost every time. I hate hearing myself say “It’s okay, we knew he was sick” because it is not okay at all ever. Sometimes I don’t talk about Owen when I want to because I’m worried it will make other people ill at ease, which truly sucks…but no one has ever asked me not to. I pretty much stopped referencing Owen on social media after he died because I didn’t want to be attention-grabby, which actually sounds kind of absurd now that I’ve typed it. So after today, no more. My baby died. And since I have to live that reality every day, I think I should get to live it as I want to, not in reaction to how (I think) other people perceive it.