My Cystic Hygroma Story

My son at 20 weeks gestation, the day we learned about his cystic hygroma.

Trigger Warning: discussion of miscarriage, stillbirth, infant loss

It’s been nearly 8 months since the day the doctor told us our son had a cystic hygroma. We had never heard of it before and everyone I have told since has never heard of it.

According to the NIH Genetic and Rare Diseases Information Center a cystic hygroma is “a fluid-filled sac that results from a blockage in the lymphatic system . It is most commonly located in the neck or head area, but can be located anywhere in the body. It may be discovered in a fetus during a pregnancy ultrasound , or it may be apparent at birth as a soft bulge under the skin.”

Our son’s cystic hygroma was located on the back of his neck and presented until birth. In addition there appeared to be small cysts on his brain which resolved before he was born. After learning of the hygroma I underwent an NIPT to determine the risk of the three trisomies that are sometimes present with hygromas, 21, 18, and 13, or syndromes wise, Down, Edwards, and Patau respectively. It is important to note that the NIPT does not test the presence of these trisomies in the child but rather the probability. An amino is the only way to test in utero whether the child actually has one of these chromosome disorders. Amnios are accompanied by an increased risk of miscarriage. We declined the amino for our situation.

Our NIPT results showed our son was low risk for the three trisomies, and very low risk in particular for trisomy 21 or Downs Syndrome (1 in 10,000 chance).

Regardless the prognosis for fetuses with cystic hygromas detected after 20 weeks was shattering.

Our son was born July 31, 2019 via Pitocin induction and vaginal delivery with no complications.

According to the NIH, “cystic hygromas detected prenatally on ultrasound are associated with an increased risk for chromosome abnormalities (particularly Down syndrome) and birth defects (particularly heart defects). Both of these increase the risk for miscarriage, hydrops, fetal demise, and neonatal death. Increasing size is associated with an increasing risk of an underlying abnormality.”

The percentages being thrown at us were staggering. Something like 80% of fetuses diagnosed with a cystic hygroma at/after 20 weeks developed hydrops and ultimately experienced organ failure resulting in their death before or after birth. Of the survivors the cause of the hygroma in 60% of those cases was linked to heart defects, often associated with one of the syndromes mentioned above. In about 20% of the surviving cases, the hygroma had no true cause and is considered more of a cosmetic concern.

Our son enjoying some Daddy cuddles.

As a reference librarian at a community college, for the first time I came to resent my professional skills and access to medical research. I obsessively scoured our online databases for any kind of hope. There is not a lot of research relating to cystic hygromas in fetuses. Much of the research that does exist on the platforms I have access to was older, from the 1990’s. I turned to message boards and anecdotes and found some people who had also experienced a cystic hygroma diagnosis. They too felt helpless and scared and confused.

The day we found out about the hygroma we went back to the car and I sobbed. I was certain we were going to lose our son and I felt the weight of an immense guilt I have never before experienced.

We didn’t buy any baby clothes or even think about the nursery for months after. All I could think about was if he dies I couldn’t bear to look at a room meant for a living baby. An empty promise. Where other couples were planning baby showers or baby moons my husband and I were making funeral plans. Pragmatic but, god, no one should have to shop for a child size coffin.

Swollen, scared, but finally learning to smile again.

I don’t think I truly smiled again for weeks. Our oldest child took on a lot of this emotional turmoil as well. She didn’t understand, she was two and a half, but she sensed our hurt and there were times I couldn’t hide my distress.

We had to think about how this would affect her, not only by losing her baby brother who she was so excited to meet, but the effect the loss would have on us. I hated the thought of my toddler having to bear witness to that kind of grief but knowing it was inevitable.

To really put the icing on the cake I was rear ended a month later, the woman who caused the three car accident was uninsured and to this day has not had to reckon with her mistake while we were out thousands of dollars before our insurance could reimburse us (get the uninsured motorists claim, trust). I had whiplash for two weeks after but was more concerned by the seatbelt that had yanked me back into my seat when I was hit, tight against my pregnant belly. I didn’t know what kind of trauma might be inflicted on my baby by the force, if he had a heart defect how my stress might affect him, or if I had peed or was leaking amniotic fluid (thank God it was pee). I spent 24 hours in the hospital under a fetal monitor.

My trunk was smashed and jammed shut.

We saw the high risk OB the remainder of my pregnancy, had monthly anatomy scans, and were referred for a fetal echocardiogram. The heart scan pre-birth came back normal with the caveat that the fetal heart was so small there was room for error. We scheduled another echocardiogram after birth and have since followed up once and plan for another follow up in a couple of weeks. So far, our son’s heart is still considered normal, no evidence of major defects that our specialist is alarmed about.

At 36 weeks gestation, an anatomy scan alerted our high-risk OB to the possibility that our son had stopped growing about four weeks prior. He was considered to be in the 4th percentile overall for his size based on the sonogram measurements. I was immediately put on bed rest and an induction was scheduled for a week later.

At 37 weeks I was induced with pitocin, had my water manually broken, and delivered my son. He was 18 inches, 6 pounds 4 ounces, and perfect. When I say perfect I mean the high-risk OB was totally wrong about his size, his proportions, and the cystic hygroma was so small you couldn’t tell anything was wrong. My son has a little extra skin on the back of his neck but it has not affected his breathing or swallowing at all. He took to the breast immediately. He underwent several tests in the hospital, some typical of the newborn array, some specific to the concerns. My placenta and his cord blood were sent away for a complete chromosome check.

We brought our son home two days later, cautiously optimistic. He had smashed all expectations so far. He struggled a little with nursing after coming home, being three weeks early he seemed to have difficulty drawing milk and for a few weeks I was breastfeeding, then pumping to feed him which basically meant I was always in the process of feeding him, getting 30 minutes to an hour of sleep here or there.

But he grew quickly and strengthened. He is currently around 15 pounds at almost four weeks making him more than double his birth weight. He is so strong, he can hold his head up and already struggles to try to rise. He loves to watch the world around him, his sister, the dog, the Christmas tree lights. He is smiling and starting to giggle. He coos and makes consonant noises. He seems right on track developmentally.

His chromosome test came back abnormal. We don’t know the full results of the test yet or the implications for our son’s future, his cognitive ability or physicality. We have an appointment with a genetic counselor in January to get those results.

There are unknowns, and somewhere down the road the cause of the cystic hygroma may rear it’s head. I wanted to share our story up to this point. When I was first told and went searching for support there is so little. The pain of thinking you will lose a child is second only to the actual loss. I needed to be comforted and given hope. I want this story to serve as a beacon to someone like us.

He is so curious about the world around him.

I can’t promise everything will be alright, heck, I can’t even promise that for my own son. But if you find our story please reach out. I will be here to support you, to hold your hand and cry with you. To know exactly what you are feeling and not give you empty promises, that’s not what hope is anyway. Hope is strength and if I can lend strength to any mother or father experiencing that, please take it. Take these images and our anecdote and know a success story is possible, doctors can’t know every outcome, and statistics are not people.

Almost every day I look at my son, my little baby and I don’t know why he was spared when so many others suffered. I will never understand it and I will never be able to repay it. To God, the universe, chaos theory, whatever. It feels miraculous, it feels like a gift from God. It feels like I should go buy some lottery tickets. It’s feel good but it also hurts. I can’t really explain what it is that goes through my brain when I try to connect the doctor’s early prognosis and the seemingly healthy, happy infant in my arms as I write this.

Photo by Jessica Starr Photography

He coos and I cry. He giggles and I cry. He lifts his head and I cry. He is alive and he completes our family and I will never take this gift we’ve been given for granted.

To the Little Boy with the Cystic Hygroma

This is your heart beat.

A slow steady rhythm marked by flickering white light.

This is the pulse of life.

An erratic fast then slow but pushing on relentlessly.

In the rush of everything, everyone, and everywhere I need to be,

I listen for the thumping in your chest

That sets my steps

And Moves me on despite the setbacks and lacking self-confidence.

I listen for the next beat with bated breath.

Keep beating though the journey is long.

Keep beating though the slog is hard.

Keep beating to guide me where I can hold you in my arms

and become the one who leads you beyond.

Coal Fired Lives

Buckets of coal,

cast iron stove,

indelibly stained

the palm of my hand.

 

Firing the blood

that runs in my veins,

the vein of descent

from coal mines.

 

Black dust lined

lung linings,

buried alive,

bulldozed remembrance.

 

Long winter nights

around the stove,

the cracking of coal

our lullaby.

To Childhood Heathens Who Grew Up

Frost rimes the trees like the Queen Anne’s Lace that grew alongside the holler roads in June,

on the hazy afternoons when we had no place to be, no ends in sight, on the winding one-lane, old paved roads where we took flight.

Bike pedals slapping shin bones when we hit the hills just right,

free descent, lungs too strained for our squeals of delight,

we have always been wild and strange

creatures who wandered the Appalachian hills but sought a broader horizon.

NaNo ’18: New Projects, Old Projects, and This Crazy Thing Called Life

I have been MIA lately and I am not ashamed.

Between work and the projects I have going on and having a toddler, husband, and household to run blogging is pretty low on the totem pole of importance.

What I have been doing, however, is working on the second draft of my Camp NaNo ’18 project, Changeling. That is an experience. I have been carving out an hour or so every few days to work on it.

After my first read through of the first draft I made notes and the second draft is implementation of those notes. This is essentially just me deleting large chunks of the first draft and writing entirely new scenes to make things connect and make a little more sense than it did before. Besides some glaring plot holes in draft #1, I am also changing place names (turning real place names into fantasy names to give myself more creative license in future drafts), and fixing obvious grammatical errors.

So that has been an experience. I am not done with the edits and I am already marking places where I need to return in the 3rd draft and do some major revisions.

Overall, progressing though slowly.

I am hoping to finish the edits before November 1st so I can begin a new project with slightly less guilt.

Foxface: A Novel. Justice is for the rich, for everyone else there is revenge. Author name: PhantasyCreator90. NaNo 2018.
NaNo signature banner featuring NaNo ’18 project.

As always, the new project is shiny and I am itching to move on. But I think Changeling is worth suffering over so I am committed to the revisions.

The shiny new project is a little different of a vibe from Changeling. For one, the shiny new project is steampunk so right away the time and setting will be vastly different. Tech will play a big role in it which is a challenge.

I also think the characters I am writing are vastly different and it will be interesting to get inside this new creation’s head and soul and see what I can find there. Foxface has suffered much more than Viviane and Rose (Changeling‘s main characters) and she has a score to settle. From my preliminary visits with her, she doesn’t seem content to let anything go.

Foxface, like Changeling, requires a lot of research into the historically relevant aspects of the story. Its heavily inspired by the politics of the Scandinavian region during the 1800’s-1900’s and the oppression of the Samí people in Norway. But its steampunk so its alt-history and I can take a few freedoms with some of the details.

I obviously like challenging myself with these history inspired stories. I think the context of certain events in human history just adds such an interesting significance to fiction. I like grounding my dreams in reality, I guess. Not even sure that means anything.

Anyway, that is the short of my creative projects. I have been sneaking in some reading time where I can. I think since my last review (Girl, Wash Your Face) I have finished seven more books:

  1. A Breath of Snow and Ashes (Outlander Series) by Diana Gabaldon-3 Stars
  2. Troubleshooting Your Novel: Essential Techniques for Identifying and Solving Manuscript Problems by Steven James-5 Stars
  3. Mama Gone Geek: Calling On My Inner Science Nerd to Help Navigate the Ups and Downs of Parenthood by Lynn Brunelle-3 Stars
  4. Arabella of Mars (Adventures of Arabella Ashby Series) by David D. Levine-3 Stars
  5. An Echo in the Bone (Outlander Series) by Diana Gabaldon-3 Stars
  6. 1984 by George Orwell-5 Stars
  7. Crooked Kingdom (Six of Crows Series) by Leigh Bardugo-5 Stars

I should have been writing reviews for these books but honestly my mental health has not lent itself to a desire to do that. Taking anti-depressants regularly keeps me sane but it puts a noticeable damper on my ability to write, or write something I feel comfortable sharing.

But I am currently reading three books and I am hoping I will be able to write some meaningful reviews for those. Check my Goodreads if you’re interested in what I’m currently read.

Enough of that, back to work!

Marriage: More Than a Shiny Ring

When my husband proposed, I have to admit, part of my surprise was at the stunning, shiny ring he picked out. The vain, materialistic part of me always wanted a pretty engagement ring, and it made driving on sunny days very pleasing.

But…when my husband and I said our marriage vows, I realized the ring symbolized so much more. The size, the shape, the material of the ring does not matter. That ring is a visual reminder of something far more impressive. Your willingness to commit to another person.

I was 25 when I married my husband. That was only 3 years ago, but it feels like another lifetime some days. Since we said our vows, we have had our first child, and my husband spent a year overseas serving. These types of significant life events tend to change people, and I definitely feel like we have changed since that sunny June day nearly 3 years ago. Having a child in and of itself can put a severe strain on a relationship. Lack of sleep, stress, added financial responsibility, and a plethora of other worries can take a couple’s focus off of each other and off of keeping the spark in their relationship.

Here I would like to confess to another sin. I have not been trying to keep my relationship going. I love my husband, but a part of me, that exhausted, cranky part that is honestly just trying to make it to bedtime, has taken control and lost sight of the long game. I have been short, irritable, and disconnected. And my husband noticed.

Lucky for me, he called me out. A lot of men might shirk from that. A lot of women might too. Confrontation is not a fun thing. We all just want our days to run smoothly, to be happy, and not get into the dark, gritty stuff. I hate drama. I hate arguing. I hate crying. I just want to be happy and watch Netflix. But often, working through these low points is the only way to resolve and strengthen a relationship. And I had to be willing to set aside my pride and listen to my husband. I feel like last night was the first time I’d really heard him since he came home in November.

I have to learn to take equal responsibility in keeping our marriage a priority. Otherwise, we will fall apart. Like maintaining a home, it has to be lived in and tended to so that it doesn’t collapse in on itself.

I feel like we are getting stronger though. We have been through so much together. My husband is my best friend, the only person I can see myself growing old with, the father of our child. He is my soulmate and my person.

When you get that ring, especially when you’re young, it is so easy to only see the upside of marriage. You see laughter, dinners together, movie dates, a bed buddy, gifts, and kisses. You can’t possibly know the hardships that accompany maintaining your commitment. You will want to walk away a thousand times. But the real test is staying when you want to run. It’s planting roots when you want to take wing. It is a choice to make your relationship work and salvage the good from the wreckage of an argument, to use that to build an even stronger relationship each time.

I feel like a lot of people, especially my generation (Millenials) and younger, fixate on the parts of a marriage that can be shared on social media. The big engagement on YouTube, the photo of the ring on Instagram, the meshed or punny last names for the wedding hashtag on Twitter.

Those things are fun, don’t get me wrong. But there is an age-old aspect of marriage we shouldn’t lose as we take ownership. That is the solemnity of the commitment you are making. Because when it gets hard and the jokes aren’t funny anymore, you need something concrete to bring you back to why you married this person in the first place. And if you can’t find that in the beginning, maybe you shouldn’t be getting married at all.

If all you were there for is the bling and the party, maybe try renting a bouncy castle instead next time. It is not the rings, not the wedding decorations, not the hot air balloon ride over the English countryside that served as the backdrop to your proposal, but the people that will make the marriage. Make the more significant commitment to that and happiness will be your reward.

I Tried A DNA Testing Kit: Here’s What I Learned

I was one of many who took advantage of DNA ancestry kits going on sale over the holidays. I purchased Ancestry DNA through Amazon for about $60 in December. Per Amazon Prime shipping, I received the kit two days later.

Collecting Your Sample

Included inside was instructions for collecting the sample and sending it in with a box with prepaid postage to send the sample in. The sample is deposited in a tube filled with a stabilizing fluid. You fill the top of the container with your spit (you have to wait thirty minutes after eating or drinking anything which was surprisingly challenging) and then seal it and break the barrier to allow the stabilizing fluid to mix with your spit.
The kit had to be activated before sending on the Ancestry website as well.

Waiting

Once the kit was mailed, you could track the progress of your sample through the Ancestry.com website. From arrival to processing to complete, your spit’s journey is projected in a little progress bar.
I mailed in my sample around December 22nd and received an email that my sample had arrived at their labs on January 4th. The website stated that the waiting period from arrival to the beginning of processing could take anywhere from 6-8 weeks due to high demand, but I ended up receiving my results on January 30th. About three and a half weeks from arrival which was a much faster turn around time than I had anticipated.

The Results

The result was delivered in a linked email which leads to the Ancestry website and is found under the DNA tab.

Home

 

AncestryHome
DNA Matches and DNA Circle redacted to protect identities.

From the homepage, you will find access to you ethnicity breakdown with the majority ethnicities showing from the home widget. You will also find added features unique to Ancestry.com which matches you with suggested relatives who have completed their own DNA samples and DNA circles that have already been mapped to shared ancestors.
The DNA Matches for me have been accurate thus far as I was matched with at least two known relatives, for example, Ancestry was able to accurately discern a first cousin as a first cousin. Which is cool. I had minimal contact with my biological father and his family, so I am very interested in connecting with more people from his side.
Consequently, not knowing my father’s family (he was adopted) led me to take the test in the first place. My mother’s side has a pretty detailed genealogy completed by my grandfather and uncle, so I was confident in the information I had on their pedigree.

Ethnicity Region Breakdown

 

AncestrySharing
Ancestry provides three cards for easy sharing on social media.

You can share your results on your social media or by email with these predesigned cards which gives you three different options for displaying your ethnic breakdown. I chose to share the middle card.
I am a very white, freckled, coppery haired girl, so the high confidence ethnicity regions did not surprise me. My brother had done some digging on my father’s relatives in the past and had traced our birth surname to a Scandinavian name so seeing that reflected in a high percentage was very interesting and reaffirmed the information he had uncovered. Sidenote: since discovering our Viking heritage my brother has grown a pretty impressive red beard.
The low confidence regions however really interested me. I think it reveals a pretty complicated history of my ancestors’ immigration. I know some history which can explain the more southern regions. There was a time in history when Germanic tribes (Visigoths and Goths) settled all over Europe including southern areas which may explain the percentage of my DNA from those areas (the Iberian Peninsula and Italy/Greece).
I was also surprised by the 1% European Jewish. This may come in through several branches of the family tree. Jewish people have experienced many periods of migration, facing frequent discrimination and expulsion from various regions. Ancestry provides a brief history of each ethnicity region and explains that the Jews who settling in Germany were called the Ashkenazi Jews and spoke Yiddish. This is likely where my percentage descended.
ethnicitybreakdown.png
Ancestry provides an interactive map where you can break down each ethnicity region, including the countries that comprise the region and an overview and link to more history of the region and the people who lived there.

Migrations

Besides showing the ethnicity regions that reflect in your DNA, Ancestry provides insight into significant migrations relative to your DNA results. I had a couple of substantial migratory periods in my ancestry, including the movement of the Scots-Irish to the Appalachia region and then the Appalachians into the Ohio/Indiana/Michigan region post-WWII.
 

AncestryMigrations
Many Scots-Irish settled in Appalachia during this period and, due to the isolated nature of the region, the community still retains many of the linguistic, religious, and familial tendencies of their ancestors. This is where I still live today.

Pros and Cons of Ancestry DNA

Pros

Ancestry.com is a trusted genealogy website. They are good at what they do and provide the appropriate tools to really get the most out of your results.
Many public libraries have subscriptions to Ancestry.com meaning you can access the advanced features for free! The community college library I work at has a subscription as well, and many other colleges in our area are trialing the site as well.
You can connect with living family members.
Cost is low compared to other DNA Testing Kits.

Cons

Ancestry.com costs money to access advanced features (searching vital records, connecting with completed family trees that you are matched with, etc.) if you don’t have access to a subscription already.
Other DNA testing kits such as 23andMe provide the option to test for genetic health risks and whether you are a carrier, though this is an upcharge. 23andMe also can check to see what percentage of Neanderthal DNA you have retained. Which is…something?

Is Ancestry DNA Worth the Cost?

This is very subjective. I feel like these DNA testing kits appeal to a particular population, those who have been adopted or whose immediate relatives were adopted or who have lost track of their genealogy. And care about their lineage. Coming from Appalachia, many people here are very preoccupied with their family trees. During elections, it is not uncommon for candidates to list their parents and even grandparents in their ads.
I am both interested in my family tree because of the regional preoccupation and because my father was adopted. For me, the test was more than worth the cost just for the ability to connect with living relatives and more efficiently build my family tree on my dad’s side. I also have access to the Ancestry subscription through my institution and can dig deeper than the DNA service allows for nonsubscribers.
If you don’t have any weird deviations in your family trees like adoption and your family has had access to well-kept birth, marriage, and death records this service is probably not for you. It won’t reveal anything you don’t already know. However, the kits which test genetic disorders might be a more cost-effective method for those wishing to conceive who also want to test to see if they are a carrier for any kind of genetic disease.
I am pleased with my results, and with the service, I have received thus far from Ancestry DNA and Ancestry.com.
#notsponsored
 
 
 

Someday

I know there will come a day
When our daughter does not know your absence
When the distance between you and her
Is bridged and Daddy returns
Home.
 
The day when playtime is physical
Not seen through the screen
Of a “smartphone” that still doesn’t understand
The power of human contact.
 
And the USO story times become fables
As you build forts under Minnie Mouse comforters
And she follows the words you point at as you read.
 
And you enjoy homemade cookies fresh from the oven
Still steaming when you crack them open.
 
And you come home to find our love for you is still the same.

Building Castles in the Air

Slats of sunlight dapple

the edges of my memories

of you

of us

twirling in the kitchen

laying sideways in our bed

blinding our view of the television

where we curled up each evening

the warming Spring days meant open

windows, wafting

breezes, evening

strolls across the railroad tracks

during lengthening evening twilight

holding hands

holding hands, our breaths

as we wait for separation

a year long pacing back and forth

agitated

afraid

savoring

slowly becoming numb

with every creeping day.

We Are Infinite

I see eternity within your eyes
When you stare back into mine
Through my soul to the end of time
To where the gods are said to shine
When prayers are offered to their shrines
And you and I don’t need to find
Absolution, we have discovered in kind
Our salvation through each other’s minds
Delicate balances as we attempt to align
distance and affection, marriage defined
Anew for this moment of mankind’s design
Our commitments to country but disinclined
To prioritize wars of rich men’s asinine
Beliefs (see: portfolios) but beyond serpentine
Leaders we gather our courage and combined
We are unstoppable, indivisible, winding vines
On the scale of an infidimensional timeline.
I love you.