Our Little Scientist

While we certainly did not make the choice to carry Joy to term based on the contributions her life could make to science, I am very happy to share that we were able to participate in several studies and published papers during and after her brief life.  Some of these might be of interest to you or people you know, so please feel free to pass these links on.

- Joy was an organ donor. I plan to write a completely separate post on that topic soon.

- The first study that we participated in was Duke University's study on Anencephaly and Neural Tube Defects.  There is still a lot that is unknown about the causes of anencephaly.  We know that it some cases are related to insufficient folic acid that causes the neural tube not to close completely, but there are questions as to other environmental or genetic components.  Duke is doing a multi-year study looking at DNA and environmental factors to try and solve some of these issues.   We were able to participate in their study by completing a phone interview and submitting blood samples from both Eric and I as well as blood from Joy's umbilical cord.  To date, Duke has collected samples from 5,700 individuals in 1,500 families.  There are no firm answers to date, but progress is being made. If you're curious, here is the link to their most recent newsletter.

- On a related note, Duke also completed a study in 2015 in which we were able to participate about the Psychological Effects of Carrying a baby to term.  The resulting paper has been published, and here is part of the abstract.

"Objective: The aim of the article is to examine the psychological impact, specifically symptoms of grief, post-traumatic stress and depression, in women and men who either terminated or continued a pregnancy following prenatal diagnosis of a lethal fetal defect.

Method: This project investigated a diagnostically homogeneous group composed of 158 women and 109 men who lost a pregnancy to anencephaly, a lethal neural tube defect. Participants completed the Perinatal Grief Scale, Impact of Event Scale – Revised and Beck Depression Inventory-II, which measure symptoms of grief, post-traumatic stress and depression, respectively. Demographics, religiosity and pregnancy choices were also collected. Gender-specific analysis of variance was performed for instrument total scores and subscales.

Results Women who terminated reported significantly more despair, avoidance and depression
than women who continued the pregnancy. Organizational religious activity was associated with a reduction in grief  in both women and men.

Conclusion There appears to be a psychological benefit to women to continue the pregnancy following a lethal fetal diagnosis. Following a lethal fetal diagnosis, the risks and benefits, including psychological effects, of termination and continuation of pregnancy should be discussed in detail with an effort to be as nondirective as possible. "

The complete study is found here - I think it is a really interesting read (though I may be biased!) I know I personally feel that though it was difficult to carry Joy to term, it would have much more difficult dealing with the "what ifs" that an early termination would have brought. I was excited to see this study that adds some scientific clout to my personal experience.  If you know anyone who works in the medical field, please be sure to pass this study on to them.

- Last but not least, we were contacted out of the blue about a year after Joy's birth by a CRNP at the hospital where she was born to see if we would be interested in participating in a case study about neonatal organ donation.  Of course we said yes, and we answered a series of questions via email. When I heard the word case study, I assumed we were one of many participating, but as it turns out, we ARE the case study.   In another case of God's providence in the little details, we got the first draft of the case study literally as I was in the hospital in labor with Noah.  Stranger yet, Noah ended up in the NICU for a week after his birth, and Mary, the co-author of the paper (another CRNP) was taking care of him in the NICU recognized our name on rounds and we got to meet her and have a great conversation.

There were some things I didn't like about the first draft (certain changes were made to the details of Joy's birth story to make it more anonymous. However, though the I know the point of the case study was not specifically related to anencaphaly, if a parent carrying an anencephalic baby would happen upon the paper, I thought that making some of the details of Joy's birth accurate that were chose for specific reasons and after much research would be helpful.)  We got to talk through these things with Mary and she and Kathy were happy to make the changes we desired.  So there are still a few things that are not quite true (Joy aka "Abbey" in the study) did not live for an hour, but overall the details are much more true to life.    Here is a complete .pdf of the study, if you're interested in reading it or passing it on to someone who works in a related field.

Joy's birthday party

As I mentioned in Joy's birthday post, our birthday tradition is to have dinner and cupcakes at the cemetery.  Last year the weather did not cooperate, but this year it was gorgeous and we had a great family time together.  The cemetery where Joy is buried is quite lovely, so we even took a little stroll around after dinner.  Like any good mom does, I'd love to share pictures of our celebration, so here are a few glimpses into our evening.


I don't really care for this picture of myself, but it's the only one we got that I was in!






We sang "Happy Birthday" to Joy before we had cupcakes, and I think Noah was a bit confused. He was looking around a little like "where's this mysterious Joy person?"!  That certainly didn't stop him from enjoying the cupcake!
 





I love this sweet picture of Noah and his sister!


Happy birthday, sweet Joy!

The aftermath, part ii

I know I have been extremely neglectful of this blog lately, but I do really want to finish Joy's story.  So, when we left off, we had just left the hospital and had a beautiful service for Joy.  So now what?  It was back to real life.  On the surface, everything was much the same as it had been before - I was a stay at home mom with an active little boy.  But I was acutely aware of just how normal and same everything was.

Thankfully, I felt amazing well physically quite soon after Joy's birth.  This meant that we were out and about, doing all that regular "fun" summer stuff.  But that's not where I wanted to be.  I remember breaking down one beautiful summer evening as the three of us were at our neighborhood park.  I didn't want to be at the park - I wanted to be home on the couch, nursing a newborn and managing a wild toddler as I had imagined months before.

Honestly, this time is a little fuzzy in my brain.  With the Olympics coming up soon, I was trying to remember why the last Olympic games seemed so fuzzy to me (unusual, because I LOVE the Olympics).  Then I realized that they were taking place four years ago, just as Joy was born and died.  No wonder I don't remember the results very clearly!

Anyway, I do know that it was a strange mix of emotions.  For the first few weeks, I was terrified that someone might ask if I was pregnant, since I looked, as most newly postpartum women do, 5 months pregnant.  Nothing fit and nothing looked right.  I remember it being frustrating in the same way after Liam was born, but at least I had a cute baby to distract everyone from my lumpy look!  Mercifully, I got very few comments or questions.  Looking back, it must have seemed odd to people whom I saw on a regular basis (librarians, the grocery store clerk) that one day I was very very pregnant and the next I was not but did not have a baby.  I guess in those situations people knew better than to ask, and I was so grateful.  For as openly as I can discuss it now, it was very hard to discuss it at that point.  I did have one situation where a lady I saw at a CSA pickup excitedly ask "where's the baby?" when she saw I wasn't pregnant.  I was able to calmly explain that she passed away shortly after birth but that we were expecting that to happen.  Of course, she expressed her sympathy and apologized for asking, and I was put in the odd position of comforting someone else over my child's passing.

At the same time, Joy's passing made me even more grateful for Liam and the crazy normalcy he brought to my life.  Not that he was a replacement for her, but a welcome distraction, and a reminder of the blessings that God had brought into our lives already.  And of course, he wasn't about to let me sit on the couch and wallow in self-pity - we had parks to visit and matchbox cars to drive.  He had a terrible transition from crib to big boy bed, but part of me didn't mind snuggling him in his bed as he fell asleep...it was good to be needed by my "baby".

I was (and am) grateful for the continued support of our church family during this time. Our church has an amazing meal ministry in which volunteers deliver meals thrice weekly for a month or two after babies are born, during illnesses, etc.  The church graciously provided meals for us for several weeks after Joy's birth.  Part of me felt slightly guilty about this because I was physically capable of cooking for our family (see above regarding feeling fine), but mostly I appreciated the fact that they were willing to care for us in this time of mourning.  And though I wasn't taking care of a new baby, it was still emotionally and physically draining taking care of a two year old during this strange period.  Speaking of which, our children's ministry director graciously offered Liam a free spot in our church mom's day out program for the remainder of the summer.  I really appreciated the chance to flop on the couch and just be quiet and still, take some time to journal, or even go and sit at Joy's grave.  "The church" today often has a bad reputation, but I think we saw the church at its best during this time.

From there, life just continues to go on.  I don't think you ever get over the loss of a child, but the grief ebbs and flows and changes.  Certain situations happen that bring our loss sharply into focus again, and then other times it is not in the forefront of my mind.  For example, we have a group of friends whom we have been close with since we were all young single people.  Now most of us are married with children, most of whom happen to be boys (just recently a few girls joined the clan, but at least 3/4 of our offspring are male).  We were on a camping trip recently with this group, and one couldn't help but observe that ALL NINE children on the trip (6 and under, may I add) were BOYS! Of course, this observation was verbalized by myself and others over the course of the weekend, and every single time I couldn't help but think that there should be a grubby little redheaded girl in the midst of all those boys.  Of course no one is making that remark to be hurtful, and I even commented on myself, but it certainly stings a little every time the topic is brought up there or in other similar situations.  I have a few friends who occasionally chime in with a comment that shows they have not forgotten about Joy.  It's not necessary, but it is truly appreciated in those instances to know that though she is out of sight, she is not out of mind. 

While I've always mourned the fact that I wouldn't get to see her grow up, that has become more real lately.   Four years removed, I frequently see a few girls were born at the same time of Joy.  I've always considered this a mixed blessing - it's kind of nice to be able to see approximately how old and big Joy would be, but of course it's reminder of our loss.  For some reason, perhaps because they are growing up from toddlers to little girls, it's really hard to fathom that we could have a 4 year daughter in the house, playing ponies and princesses and watching Frozen ad nauseam.  However, I am so blessed with my 2 boys, and truth be told, probably make a better boy mom than a girl mom. Bring on the dirt and the noise and the trucks and Legos!  

Happy 4th Birthday, Joy!

I think I've started every birthday post on Facebook or my blog for all three of my children with these words..."I can't believe X is Y years old". So true to form, let me say, I can't believe our sweet Joy is 4 years old...or would be 4 years old today...or was born 4 years ago today. (I never even know quite how to phrase it but you get the point!)

These four years have passed quickly in some ways, and yet it seems so long ago that Joy was born and we got to hold her and be with her for those few moments. In that time, Liam has grown from a inquisitive chubby toddler to an inquisitive long-legged kindergartener (eek!) and another inquisitive preschooler has joined our family.  

While the birth and passing of Joy has brought sorrow and sadness to our life, her brief life has also brought many *joys*. We've seen the support of close friends, family, and the church, who celebrated her birth and remember it four years later. We've seen God working in our lives and are excited to testify to that fact. We were able to participate in scientific research of several kinds (I'm hoping to post more on that soon.). We've been able to walk alongside others facing pregnancy and infant loss. 

So much about the situation is bittersweet, and it is epitomized in hearing Liam talk about his baby sister. In the way that children are, he is very candid about the situation and talks from the heart without reservation. His understanding of Joy's life has continued to grow - I don't remember the first time we told her about Joy, but we talk about her frequently (usually led by his cues) and fill him in gradually as is age-appropriate. At this point, he knows that she was born when he was 2 and died a few minutes later because something was very wrong with her head. He is so sweet in talking about her with Noah - "Noah did you know we have a sister? Let me show you the picture of her feet (which is on display in the living room). I will tell you about her." Oh, it just breaks my heart, but makes it swell at the same time. Just the way he matter-of-factly uses the word "sister" - it's not a word we hear in our house frequently. And the fact that no 6 year old should have to explain to his 2 year old brother about their deceased baby sister. But he handles it so well, even if in a different way than an adult does. (By the way, I'm not making Liam out to be some kind of angel, he certainly has his faults...but the way he deals with this situation amazes me.) He proudly told his mom's day out teacher that today is his sister's birthday and we're going to have pizza and cupcakes to celebrate at the cemetery. I guess for him, it is just part of his life. He asks questions when he is curious, processes it, and moves on. The other day we were folding laundry and he asked me "Did Joy ever wear clothes?" I told him that she did wear clothes in the hospital and that she was in fact buried in clothes. He thought for a minute, said "that's kind of weird that she was buried in clothes." I agreed, then the conversation changed topics. I'm grateful for this not-so-little guy and his sweet care of his baby sister's memory. Here's a picture of the boys last fall with their "Joy bear" who was lovingly made by Molly Bears in the exact weight of Joy when she was born.

I don't think you ever get over the loss of a child, but the grief ebbs and flows and changes. While I've always mourned the fact that I wouldn't get to see her grow up, that has become more intense lately. At first, I was mourning the loss of that tiny baby, of growing a child I could not take home. But now, particularly as Noah is growing older and has such a distinct and entertaining personality, I am mourning the fact that I will never get to watch her grown up. I often wonder what Joy would have been like. (I mean I understand that her growing older was not part of God's plan, but I'm just letting my imagination wander here). Would she have been spunky and energetic and analytical like her brothers? Or more reserved like her mom? Athletic or artsy? Silly or serious? As the boys turn from babies into real little people and we see their unique selves emerging, it makes me mourn for missing those milestones and funny moments with a sweet red-headed girl (at least that much I know for sure!). 

In the past, I've struggled with how to celebrate this day. This year, I feel like I'm confident with the plan we have in place. It's still a strange way, but I think we're celebrating in the best way we can. Earlier in the week, we mulched her pretty little garden that some good friends donated in her honor - full of pink-blooming perennials. This morning, while the boys are having fun at Mom's Day Out, I am taking the time I normally spend working to update this long-neglected blog. And this evening we will take pizza, cupcakes, and balloons to the cemetery and have a little picnic. (I'm hoping the weather cooperates this year!)

Each year for Joy's birthday we have also made donations in her memory - to our church (who is planning some artwork for the nursery), to the pregnancy resource center, etc. This year, in addition, I am planning to donate some books to Beverly's Birthdays, which is a Pittsburgh non-profit that provides birthday cheer for children experiencing homelessness and families in-need. Every Birthday Cheer Bin that goes out to a child on their birthday contains a book along with 5-6 other gender and age appropriate gifts, including a toothbrush and toothpaste. Last year they distributed over 1,100 of these Birthday Cheer Bins.   We love birthdays around our house, and though we don't have extravagant parties, we do make them a special occasion for the special person.  In Joy's case, there's no one to shower with fun and gifts, so it seems like the perfect chance to share the love with a little someone who is here but is not in a situation to receive a birthday gift or party.  If you'd like to join me in donating, you can do so here.   And all donations will be matched 50% by Usborne, plus of course I will be donating any commission I made because I'm not doing this to personally profit! (And it made me set a goal, so I just picked $400 for her 4th birthday - I'm happy just to donate our own contribution.)

So happy birthday, sweet girl! We love you and miss you and can't wait to see you again someday!