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.

The Witches Are Coming: Book Review

The Witches Are Coming by Lindy West

This collection of essays by New York Times columnist and Shrill author (also a Hulu original starring SNL star Aidy Bryant), Lindy West discusses several topics ranging from abortion to Adam Sandler (is he funny?).

At its heart, The Witches Are Coming is a heartfelt plea and reassurance that the world is not going to Hell, there is good in it and we have more power than we know.

The title plays off the political rhetoric of the 45th U.S. President’s Witch hunt tirades, which seemingly invoke the persecution of women by religious tyrants through history but specifically during the Salem Witch Trials. West leans into this paranoia and assures Trump, if you want a witch hunt, by God, you’ve got one.

West reclaims witch as a term of female empowerment and wields it as deftly as Dumbledore, or Hermoine perhaps. She calls out our societal hypocrisy, systemic racism and sexism, the cultural shift holding household names accountable to a new generation, one who hopefully doesn’t have to politely ignore sexual harassment because “it’s just the way things are.”

West does all this with wit and humor unrivaled in political commentary I have yet experienced.

I am not going to recommend this book to everybody, because it’s not for everybody, though the message has National, even global, implications. With all political commentary I am sure this book will piss off at least half the people who pick it up. But West is genuine in her beliefs, honest in her own biases, and graceful in understanding, yes, generations understand the world differently but we still must have progress even if it makes certain groups uncomfortable.

Filled with laugh out loud moments, The Witches Are Coming is the perfect way to end the cataclysm that was 2019 on a slightly more hopeful note.

4/5 Stars

Pachinko: Book Review

Pachinko by Min Jin Lee

“It was not Hansu that she missed, or even Isak. What she was seeing again in her dreams was her youth, her beginning, and her wishes–so this is how she became a woman.”

“Etsuko had failed in this important way—she had not taught her children to hope, to believe in the perhaps-absurd possibility that they might win. Pachinko was a foolish game, but life was not.”

“Noa had been a sensitive child who had believed that if he followed all the rules and was the best, then somehow, the hostile world would change its mind. His death may have been her fault for having allowed him to believe such cruel ideals.”

Pachinko is a big book of big, complex, sometimes conflicting ideas. This is why I think it is a more accurate view of life.

Sunja is born in Korea pre-WWII and Korean War times that split the nation into the North and South of today. she is born into a relatively poor but surviving family, the daughter of a man born with several congenital deformities, a cleft lip and club foot. But he is an honorable man who loves his daughter. His honor resonates years later with a young minister with tuberculosis who agrees to marry the pregnant and unmarried Sunja and take her to Japan.

The book follows Sunja’s life, the struggles of being Korean in Japan when prejudice was high, being an outsider with no true homeland thanks to the rapidly changing geopolitical landscape of Korea, and the timeless struggle of being a woman who must reckon with her choices and the choices of the men surrounding her.

Pachinko is a generational epic done right. The novel explores many themes as a generational story must, racism and prejudice, socioeconomic distinctions, gender roles, generational differences, guilt, redemption, love and lust. Sunja is a woman who makes mistakes, but as a woman her mistakes resonate throughout her lifetime, affecting not only herself but her loved ones.

This book is worth a read and a reread. My own generational novel is inspired by this book, her near flawless rendering of this family’s fall and rise, and fall and rise. I was not aware of the history that drives this novel, the consequences of WWII for Korea and displaced Koreans who could not return home. Historically the novel offers a lot of perspective and is a great example of the value of minority voices taking their rightful place in the global platform of such narratives.

5/5 Stars

The Silence of the Girls: Book Review

The Silence of the Girls by Pat Barker

“Yes, the death of young men in battle is a tragedy – I’d lost four brothers, I didn’t need anybody to tell me that. A tragedy worthy of any number of laments – but theirs is not the worst fate. I looked at Andromache, who’d have to live the rest of her amputated life as a slave, and I thought: We need a new song.”

The Silence of the Girls could alternatively be titled Not Another Greek Mythology Novel. Seriously, that well seems to be running dry, yet writers continue to return hoping for a geyser of fresh story that just doesn’t exist.

This novel reimagines, or perhaps tangentially imagines the story of Achilles from the Iliad. Briseis, a captured Trojan Princess (Queen?) turned sex slave to her Greek captors, narrates her captivity, her life as Achilles personal concubine, and the end of the Trojan and Greek War.

Trigger warning: rape, abuse

The story focuses on the females of the tale, the Trojan women who were spared death but forced to adopt a life far less preferable.

I do think every story has its reader. I am not this story’s reader. The author shows the characters being repeatedly raped throughout the novel. While I understand the reality of this to the situation of tribal warfare, I feel like the book was written to showcase such atrocities to men. As a woman, I don’t need to be shown such a truth repeatedly. I know the world as it is.

I am not a big fan of rape used as plot device. I rarely enjoy such narratives and find them to be too disturbing to continue when the character is subjected to the event repeatedly. Some cases this may be necessary but I did not think the repetitive imagery necessary to this story.

The author is very aware of her characters’ submission to males that made such actions forgivable to the Greeks, but also leaves open the male perpetrators to redemption in the eyes of the reader. There is honor in the system they have employed, killing Trojan men and young boys, pregnant Trojan women who may birth more Trojan men. Abducting the other women and girls and forcing them into slavery. The author seems to waffle between showing the atrocities of this tribal system and praising the men who upheld it because it was, after all, all they knew.

Clearly exhibiting Stockholm Syndrome, the Trojan women adjust to their new lives, accept the rapes largely as acceptable copulation, get pregnant, and turn to worshipping their captors while their home is continually at war with the self-same captors.

I had hoped Briseis would be the exception to this collective forgiveness.

Achilles, painted monster in the beginning resumes his godhood quickly and with little irony.

The lyrical writing saved this book. The writing is beautiful and if one could ignore the content and bigger picture and just listen to the flow of the words, they would greatly enjoy this book.

There were some insights about the burden of women in wartime, those who are left behind and survive, however horrific the survival. But the insights feel disconnected and don’t seem to fully support the theme of the book. I felt a little dizzy jumping from disdain for the Greeks to reverence.

I have read several books that won the Booker Prize for Fiction and agreed with the award. This book confuses me as to its merit. It’s okay, but not life changing and frankly a little troublesome in how the author portrays her female characters growth (regression, more like).

3/5 Stars

NaNoWriMo ’19: Appalachian Dynasty

Genre: Literary/Historical Fiction

Synopsis

William “Bill” Strong is born to a poor family in Dorset during the English Civil Wars. After losing his parents, 11-year-old Bill is sold as an indentured servant to a wealthy tobacco merchant and sent to Virginia to work off his servitude. After working for 8 years, Bill settles in Virginia as a poor tenet to yet another wealthy landlord.

Appalachian Dynasty follows his descendants through their mountains and valleys of poverty and privilege tracking their journey from farmers in southern England to coal miners in Southeastern Kentucky. Epitomizing the stereotype of a poor white family, Bill Strong and his descendants struggle against systematic forces designed to pit poor whites against people of color to ensure their loyalty during the Civil War, suffrage, and the Civil Rights movement, all while being exploited for their labor, land, and integrity. They learn they can never escape the sovereignty of wealthy men.

Loosely based on my own exploration of my family’s genealogy and settlement in southeastern Kentucky.

A novel in four parts-323 years-9 generations

  • Part 1: Divine Right of Kings (~1645-1776)
  • Part 2: For God and Country (~1777-1865)
  • Part 3: Us v. Them (~1866-1920)
  • Part 4: Can You Hear the Canary’s Song? (~1921-1973)

Goal: 90,000 words

Deadline: November 30, 2019