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.

Bed-Sharing: Not For You to Judge and Not For the Faint of Heart

My daughter has been co-sleeping since she was born.

I was ashamed of this at one time but choose not to be now. I know the safety concerns, the doctor recommendations, all of that. But still, I prefer to co-sleep, though we are, at 16 months old, trying to transition our daughter to her bed.

Why did I start co-sleeping? I suppose for the same reason other parents who co-sleep do it, we’re exhausted, and our babies refuse to sleep alone.

I tried. God knows I tried not co-sleeping. This was not our default decision. We had a nursery set up; we had the baby monitor, we had the crib with only a fitted sheet, a mobile, a nightlight. It was a nursery built for safety and sweet dreams, but our daughter had other opinions.

We then tried a bassinet in the same room but not in the same bed as us. This was also a flat out FAIL. No matter what we tried, and we tried multiple methods for soothing a baby to sleep, she would wake up again and again. To this day she is not a great sleeper, naps are short and sporadic and she usually only sleeps about 9 hours a night. I have spoken to her pediatrician about this but her development is on track, so there is no reason to be concerned.

The only place she felt confident and comfortable to sleep was next to me.

Perhaps I should have prefaced this post with this, but I exclusively breastfed my daughter since birth. Starting out I had to feed her consistently, at least every half hour to an hour. She gained weight well, but I felt like she was nursing nonstop for at least the first six months of her life. Obviously, this further complicated my sleeping habits and arrangements at night.

We tried for about three weeks to adjust our daughter to be able to sleep in her bassinet beside the bed, at the very least, without success before we gave up and began full-time co-sleeping.

The difference in the amount she slept, not to mention how much extra rest I got, was substantial.

I was devastated, but I didn’t know how else to handle the situation.

Two weeks later my husband, National Guard, deployed to the Middle East and would be gone for nearly a year.

Two weeks after that I started a new, full-time job as a Reference Librarian and Instructor at a community college.

I was exhausted all the time from solo-parenting, from working all day, then mom-ing all night. I was also suffering from post-partum depression which I still struggle with, and I was utterly overwhelmed. Co-sleeping and taking away at least one problem was probably the only thing that saved my sanity at the time. I got more sleep, able to just turn over and nurse my daughter back to sleep during her frequent night feedings. Co-sleeping also allowed me peace of mind when I was home alone all those months that in case of an emergency in the night I had ready access to my daughter.

Now, co-sleeping is not for everybody, and it requires some significant adjustments to how you sleep, from getting used to not using blankets, to understanding that you will probably not be able to sleep deeply. I am a naturally light sleeper, and I don’t tend to roll around a lot during my sleep, most nights I would fall asleep in one position and wake up in that same position. This was to my benefit when I came to terms with the fact that I would be co-sleeping. One of the few benefits of my husband deploying during this time is that there were not two adults co-sleeping with an infant, reducing the risk that arises from more bodies in a bed, though my husband is also a lighter sleeper and often slept on his back all night. Neither my husband or myself are overweight which is another factor which raises the risk of SIDS while co-sleeping with parents. Breastfeeding further reduces the risk of SIDS.

We don’t smoke. Our home’s air quality is good. We didn’t have pets at the time. We used a humidifier. We used a pacifier. We even bought a co-sleeper that can be placed directly in the bed which was useful for traveling when we didn’t want to lug her whole Pack ‘N Play w/bassinet attachment. But still didn’t provide the comfort level our daughter demanded when sleeping at night.

I read articles, I studied sleep training methods, but I could not change my daughter’s sleeping preference. Many of the articles I read which were published by major parenting sites like The Bump, WhattoExpect, and Parenting were starkly against bed sharing. But I know many people in the real world who were forced into an identical sleeping arrangement. It is almost like this secret club, shamed into isolation by more successful parents who managed to establish “safer” sleeping habits.

But a 2013 study by Colson, et al. shows that the percentage of co-sleeping parents has risen from 6% in 1993 to 13.5% in 2010, and at least 45% of parents admitted to sharing a bed with their infant “at least some of the time.” It happens, there are situations where it is just something parents do.

Whatever your preference for your child, where the intentions are obviously not malicious, where the parents are not going to bed drunk or high, or in other ways neglecting their child, you should reserve your contrary judgment of the parents who do share a bed with their infants. Bed sharing was a common practice at one point in time; my great grandparents shared a bed with their children when beds were a commodity, and many families were forced to share one bed.

There are obviously other considerations that must be taken into account when discussing infant sleep arrangements like sleeping position, does the infant sleep on their back, side, or stomach? My daughter usually slept on her back in my bed but would roll onto her side the few times she slept in the bassinet or crib.

I feel like there is a lot of online judgment towards bed-sharing parents, like most online bullying, there is a trend towards increased anonymous criticism vs. in-person criticizing. When faced with actual human beings who you can see love their child, want the best for their child, and work their butts off for their child, it is easier to, if not relate, at least sympathize.

I am not posting this to endorse or encourage bed-sharing. I am merely telling my story as a mom who bed-shared and presenting a narrative that I feel is needed in the conversation surrounding infant sleep arrangements. I hope my story makes somebody else out there who bed-shares feel unashamed, supported, and a little less lonely.

Do you bed-share? Share your story in the comments!

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What I Want You To Remember

You won’t remember the hours I spent rocking you.
You won’t remember the way I worried that you weren’t eating enough.
You won’t remember the time I spent baking and decorating your birthday cakes.
You won’t remember the tears I cried when you were sick.
You won’t remember the sleepless nights.
You won’t remember the pain I felt when breastfeeding.
You won’t remember the bedtime arguments.
You won’t remember any of that.
 
It isn’t your job to remember the work, the fears, the struggles of early parenthood.
I’m not doing my job if I place that stress on your tiny shoulders.
The things I want for you, the things I want you to remember, are only good.
 
I want you to remember the warmth of my chest under your cheek.
I want you to remember the lullabies that soothed you to sleep.
I want you to remember the taste of those birthday cakes on your tongue.
I want you to remember the tears of happiness that only you could inspire.
I want you to remember you were worth every sleepless night.
I want you to remember that your health meant more to me than my comfort.
I want you to remember the bedtime stories that taught you to dream.
I want you to remember that you were safe and loved.
 
I want you to remember we are your home wherever you roam.
 

Baby Basics: Products I Swear By

If you are a new mama, the myriad options for baby basics can be overwhelming, and babies are expensive so it can be terribly tempting to just grab the cheapest option and run. Not all baby products are created equal. We went through several frustrating periods of trial and error of testing different products to see if our daughter would have some kind of skin reaction, especially to diapers, diaper cream, and soap.
Some babies may not have any issues with the products that caused our daughter’s skin rashes, but there was a definite difference when we found just the right one for her.
Here are my favorite baby basics.

Pampers Swaddlers to this day (my daughter currently wears a size 5 diaper) is our favorite brand of diaper to use. We have the least amount of leaks from this, and we have tried several other brands in comparison including Huggies and the Pampers Cruisers.
The primary concern was definitely leakage. The Huggies Little Snugglers were the worst for leaking, they pretty much did this every time she wore them. For newborn poop, this was a big no-no. We attempted the Pampers Cruisers, and they worked okay, except at night. Ten hours was just too much for the Cruisers to hold and after two nights of waking up soaked, we gave up on those as well. The Swaddlers are consistently quality diapers, they rarely leak, and they are comfortable, no thigh rubbing, no rashes. You can subscribe and receive a regular delivery of diapers based on the frequency you choose, saving you the multiple store-runs having a baby in diapers usually requires. You can find some really helpful charts that estimate how many diapers in each size you need to figure out a delivery frequency that works for you, and it is super easy to go into your subscriptions and change as needed.
Just as important for preventing diaper rashes as the diaper, we only wavered from the Pampers Sensitive wipes once when the husband accidentally bought the wrong kind. My daughter’s butt promptly broke out after one use, and we couldn’t even bring ourselves to finish the pack, let alone the box. These are super gentle and have a very light scent.
We use baby wipes for almost every kind of cleanup imaginable from cleaning the butt to wiping hands after eating, you will find that you literally CANNOT leave the house without baby wipes. Pro-tip: Always have a backup pack in the diaper bag. Poop explosions, vomit, milk/juice spills all require a lot of wipes to clean up.
Next up, Aveeno Wash & Shampoo. This works wonders on my daughter’s sensitive skin. Its Pediatrician Recommended, made from oat extract, and works as body wash AND shampoo. You have the option to subscribe on Amazon to receive regular shipments of this product, we used about one bottle every two months when my daughter was a newborn, and now we go through a bottle a month. Subscribing can save you 5-15% on price (depending on how many Amazon subscriptions you have, the more you subscribe, the more you save) and also save you the hassle of thinking about it when you run out.
You will find you think about the health of your baby’s skin nearly constantly. Is it too dry? Is that a rash? Why is her scalp so flaky?! Desitin is another excellent product for preventing and then treating diaper rash. The Rapid Relief works best for daily use while the Maximum Strength is most useful for treating existing rashes. Buy one in the tub to use at home and buy a tube for on-the-go use. Trust. You will appreciate the convenience of both. This is definitely another instance where you will use this product for so long it might serve you well to subscribe to the product on Amazon, though the tubs last a little longer than the tube and can be ordered less frequently, depending on how often you take your little one out. But if you are buying the product anyway, why not get the discount and get them delivered regularly?
Here is a product you may not have anticipated as a baby basic but I use cornstarch in place of baby powder. You might have heard about the concern of a  link between baby powder use and cervical cancer. In 2016, a jury awarded a monetary judgment in favor of a woman who claimed using Johnson & Johnson Baby Powder caused her cervical cancer. Medical studies have not reached a conclusive decision as to whether or not there is a link. The problem ingredient is talc, which is a mineral mined from rocks, technically natural but can cause irritation. I am not one to mess with risk, even when it may be small. I don’t feel like I want to take the chance on my daughter’s health if there is an alternative that may be safer and achieves the same end. Cornstarch dries the bottom as quickly as baby powder. Cornstarch also makes an excellent dry shampoo, is cheap, and can be bought at most grocery stores.
Finally, another baby product you will need to buy very frequently (if you are not breastfeeding) is baby formula. I breastfed my LO until she was ten months old before I started having production issues. Her doctor advised me to switch to a soy-based formula as it would be easier to supplement with the breastmilk without getting a baby hooked on the formula so that she would refuse the breastmilk I was able to produce. The soy formula was horrible, and my daughter hated it. She refused to drink it, and I was still not making nearly enough milk to satisfy her. So I switched to this formula, and it was like night and day. She took to this like a fly to honey AND would still nurse from me when I needed her to. At ten months we were able to move towards weaning and supplemented with the formula until she was a year old and able to switch to whole milk. She had no digestive issues with the switch and seemed to respond as well to this formula as my breastmilk regarding weight gain and immune health.
And those are my favorite basic baby products. Those are also the things that will drain your bank account at the end of every week so I highly suggest coupon clipping, Pampers has a great rewards program that allows you to accrue points. In addition to coupons, Amazon’s subscribe & save option is also a good way to save some money and is available on many baby products like diapers, formula, wipes, food, snacks, etc.
We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites.