Lately I’ve felt like sharing my pregnancy with Genny. Maybe it’s because we are coming up on three years since we found out we would have a baby. Some of you may already know that my pregnancy wasn’t an easy one. We learned many hard lessons during those 9 months, and Genny continues to teach us every day. What made our experience different from most was the cystic hygroma diagnosis at 12 weeks gestation.
Two pink lines
Our young family began as most young families do – Ryan and I stupidly-in-love-newly-weds with not enough money living in a teeny tiny apartment located off a very busy street that made it impossible to get out of during rush hour traffic. We had been married 7 months when Ryan was out of town on a business trip to Utah. While he was gone, I went to stay at a friend’s house because the empty apartment made me lonely. Like many of you can relate, I was anticipating the arrival of – ahem – Aunt Flo, but despite the calendar days ticking away, there was nothing.
Finally I uploaded my basal body temperature chart to a fertility forum, and immediately began getting suggestions to go buy a pregnancy test. This was as I lay awake in the middle of the night, everyone else was asleep, my husband was 500 miles away, I had class the next day, and I was freaking out.
Fortunately I only had three days to wait for Ryan to get home. Three excruciatingly long anxious days. See, I insisted on waiting to take a test, or to tell him it was a possibility, until he was home with me. I also didn’t want anyone else to know before he did, so I kept my lips sealed.
(EDIT: Okay, so I did tell a couple people it was a “maybe”…Ryan will never let me forget that.)
Of course, we all know how the next part went – I took the test, got the positive, and at that point I was 6 or 7 weeks along. The next chapter of my pregnancy journey began a little over a month later. The following is adapted from a blog post I wrote for my personal blog a few weeks after our 12 week doctor’s appointment. This post says everything I wanted to say, so I decided to simply recreate it here:
Flashback to May 2016
After seeing the ultrasound of our twelve-week old baby for the first time, we were absolutely thrilled. We sat in the doctor’s office, waiting for the doctor for about thirty minutes, but we didn’t care. She could take all day. We were having a baby, and on the little pictures we held in our hands, it looked perfect.
Then the doctor appeared. She apologized for taking a long time, then sat down and said something that changed our lives from that moment on: “There is an abnormality in your baby’s ultrasound.”
I’m what you would consider a worrier. In some weird, irrational way, my brain feels like not worrying about something jinxes it into being. Up to this point in the pregnancy, I hadn’t allowed myself to worry about the host of things that could go wrong. We were young; I was healthy. The statistics were in my favor. Then I heard the doctor speak those words, and I experienced a sort of out-of-body experience where I watched my own nightmare come true.
Ryan came and stood next to me, holding my hand. I don’t know if he did that for me or for his own comfort. The doctor went on to explain what this “abnormality” was and what it could imply for our little one. As she spoke, I could feel a grip around my heart tightening and my stomach turned. I thank God for the artificial calm He gave me in that room so that I didn’t break down as the doctor spoke to us.
Cystic hygroma and possibly more
Cystic hygroma. My doctor was not an expert on the topic (probably because the chances of having a cystic hygroma during pregnancy are 0.2-1%), so she promptly made us an appointment with a specialist at Texas Children’s Hospital. It was all a blur – one moment we were excitedly heading to our first ultrasound and the next we were on our way to see a fetal specialist.
There, a genetic counselor explained in more detail what we already had researched since the ultrasound. A cystic hygroma is the result of toxins being unable to leave the baby’s body. This leads to the formation of cysts, pockets of fluid beneath the baby’s skin, like big blisters. Our baby’s spanned from its head to its butt, and the counselor counted about three of them. The cysts themselves were not the most alarming issue, although they can cause lethal stress for the baby. Rather, they are usually the result of an underlying, and oftentimes more serious, issue such as a chromosome disorder, a heart defect, a problem with the lymphatic system, or a recessive gene disorder. Each of these possibilities has its own host of statistics, none of which were positive.
A cystic hygroma is the result of toxins being unable to leave the baby’s body. This leads to the formation of cysts, pockets of fluid beneath the baby’s skin, like big blisters.
A surreal experience
I never thought that at twenty years old I would be sitting with my husband across a table from a lady telling us that there is a good chance our unborn baby will have Turner Syndrome, Down Syndrome, Trisomy 18, Trisomy 16, or a fatal heart disorder. She asked if we wanted to consider terminating the pregnancy, and we both immediately said we didn’t. No matter what this little one is dealing with, no matter what it would mean for us, it deserved a chance at life.
Is there a chance?
Desperate for some kind of ray of hope, Ryan finally said to the genetic counselor, “Isn’t there a possibility at all that something could just not be developed all the way? I mean, the baby is so small…” The lady nodded, “Yes, of course, it could be that something just has a kink in it, and as the baby grows it will correct itself and you’ll have a perfectly healthy baby. But that is usually not the case with a cystic hygroma.” So there it was. Our tiny, almost impossible chance.
Since that Tuesday, we have met life a day at a time. Some evenings after a tiring day or being nauseous and having to explain to everyone that, “Yes, I am pregnant, but the baby has this problem…” I can only come home and burst into tears.
Looking at that sweet baby’s profile, it kills me to think that I may never get to hold it or kiss its cute little nose or get to know its wonderful personality. But I feel like I need to explain it to people. Maybe so that they understand a little better where I am coming from. Ryan and I are in a strange limbo where we love our baby more than anything, but we can’t exactly expect to have a healthy baby. The list of possibilities looms dauntingly over our heads no matter how positive we choose to be. Ryan has been the best at this. He has his moments when it gets too heavy for him, too, but God has given him a strength that allows him to encourage me and to give me hope when I’m starting to lose it.
It’s confusing because I don’t know if I am supposed to trust that God is going to answer my prayers with a resounding yes, or if I am to take comfort in the promise that my baby is in His hands. Of course, I truly know that it is the second one, but knowing that the odds are against us takes my breath away. I have to cling to that promise that the Lord has our baby, and He is going to protect it no matter what. That, I do believe.
So now, we are waiting for the next two weeks to pass so we can go to the doctor and hear the heartbeat again. We look forward to that appointment with both hope and dread. Every day, I wonder if the baby is still alive inside me or if I’ve already lost it and don’t know. Ryan and I desire to hear that heartbeat so badly! The Lord is definitely sustaining us, and our marriage has become stronger because of this period of trials we have been enduring. We know we are not worse off than most, so for that we are thankful. And we have each other, so whatever happens, we will be alright. 🙂 The Lord is in control.
“Be strong, and let us fight bravely for our people and the cities of our God. The LORD will do what is good in his sight.” 2 Samuel 10:12
To be continued…
I will share the rest of this story soon. For now, I would love to hear about your stories. Pregnancy or not, how do you stay calm and at peace in the midst of trials?
Share your pregnancy stories with me! Comment below!
Love, Emily XOXO
Join the discussion 32 Comments
Thank you for sharing your story. Just today, during our 12 week ultrasound, we found out that our baby has a cystic hygroma. I still don’t know much about it, but after some research, I came across your blog. Your words ring so true for me. We are also people of strong faith, so I appreciate you sharing scripture for us to lean on. It’s reassuring to hear of a good outcome. I’m praying that our little one will also be one of the 12%.
Praying for your family and your sweet baby!! It is such a scary thing to hear when they give you a diagnosis. All the doctors and specialists want you to know the statistics and the possibilities, but none that really matters when it’s happening to your baby. All that matters then is what happens, and no statistics can determine what that will be. Anything is possible with the Lord. Love to your family! “Be joyful in hope, patient in affliction, faithful in prayer.”
Romans 12:12 NIV
Hi, Emily! I should have followed up way sooner, but I wanted to give an update – and hopefully give some hope and faith to others who read your blog. Our baby had a large cystic hygroma (>9mm), and we were given terrible survival statistics for her. But Emma is now 15 months old! Her cystic hygroma was attributed to her having Down syndrome, which I think actually increases the odds of survival with cystic hygromas (I think?). At first, I was heartbroken to learn about her diagnosis, but my heart has since been changed, and I think she’s nothing short of perfect! Her smile melts everyone’s heart, but none more than mine.
Oh, and we ended up getting a sign made with the Bible verse you shared with us, Romans 12:12. It hangs in her room and reminds us how far we have come on this journey with her. Thank you for your support!
I’m not crying, you’re crying!! Wow Kelly, what an incredible story! It makes my heart so happy to hear that your family has chosen to hold onto hope in spite of daunting statistics and a world that doesn’t look at life through the lens of eternity. Thank so you much for sharing your story with us, and updating us on your little family. Love to you all!
Hi Kelly! Hope all is well. I am currently facing the same issue and was diagnosed at my 12 week appointment last week baby has Cystic Hygroma. Would you be open to sharing your results?
How are you doing now? I just saw this was a post from July?
We are doing very well, thank you. She was born with no apparent remaining cystic hygroma at 41 weeks.
Hi I just read your blog. I’m also pregnant and they saw cystic hygroma on my scan as well but it’s only 3.2mm which is not that significant apparently. All my chromosomal blood tests are normal. I’m almost 20 weeks and I’m really scared. They were recommending amniocentesis but I was scared to do that. Need some hope and prayer for a miracle.
So sorry you’re having to go through this in your pregnancy!! It is scary, and doctors dont really help to make you feel better. In the end, all you can really do is wait and pray. An amniocentesis may give you more information, but it still will not make your nerves vanish completely. Honestly, I think that is a part of parenting that never stops! And it begins when your little one is still inside you.
If your ultrasounds dont show any glaring issues, and your blood tests came back clean, that is great news! We had the same results at 18 weeks with our Genny, and she is now a perfectly healthy 4 year old.
I hope you are able to find peace and rest in the hope that the Lord has your little one in the Lord’s hands.❤️ It is NOT any easy thing to do, and Im pretty sure it takes lifelong practice, but it does get easier with time. Love to you, Mama! Reach out any time, here or on Instagram!
Hi Sheema! Hope all is well. I am currently facing the same issue and was diagnosed at my 12 week appointment last week baby has Cystic Hygroma. Would you be open to sharing your results?
Hi, I’ve just read your blog and it’s given me hope so thank you very much. I was wondering around which weeks did you start noticing the Cystic Hygroma starting to go away and by which week did it appear to be completely gone?
Hello there, I’m glad you’ve found some encouragement!! By Genny’s 18 week anatomy scan, the cystic hygroma was completely gone, and we never had any issues after that.
Emily, this blog could not have come at a more perfect time. Your entire story seems so similar. My fiancé finally was able to see the baby via ultrasound (since COVID restrictions have increased; this was my third ultrasound) I was excited for him to feel a little bit of joy that I felt when first hearing our baby’s heartbeat. However, sadly, they found an abnormality of 8.1mm. High, yes. Devastating, undoubtedly. For both myself and of course my fiancé. What a horrible first experience for him. I don’t know how to explain this, but I’m feeling extremely hopeful and reading these stories gives me that much more hope. I know our baby is so so strong already. Please keep us in your prayers as we begin our journey…
Oh Amy, I’m so sorry! What a difficult thing to process… One thing I have become increasingly more sure of with each passing year is that doctors are not always correct. They asked us if we wanted to consider an abortion because of the high risk of birth defects, yet here we are 5 years later and she’s the most creative, caring little girl I know. It still baffles me that we could have ended her life before birth and no one would have questioned the decision…
Our experience was devastating, and waiting to learn the outcome was torturous – I cried every day for 6 weeks. But I can honestly say that at the same time I was brought to a place of trusting the Lord unlike ever before. I never thought I could truly (if tearfully) say “Your Will be done” if that meant my baby dying before I could even hold her. But once I did, I felt such an overwhelming sense of peace. That this was painful, but the Lord would get us through no matter the outcome. And He loved her, my tiny little 12 week old unborn baby that had never drawn a breath of air, more than I, as her mother, ever could. What a realization.
Two and a half years after Genny was born, we lost a baby at 6 weeks. That was the hardest thing I have ever gone through, but it again brought me closer to the Lord as I recognized my own finiteness and stood in awe of His infiniteness. It was His plan for that baby to never go through a life on earth, but instead to only know the glories of heaven. It still breaks my heart that I will never know that baby, but I have peace in knowing that His plans are always to prosper us (my baby included) and not to harm us.
You are in my prayers, Amy! You and your sweet baby. Thanks for reaching out!
Thank you for sharing your story. I just found out about a cystic hygroma as well 2 days ago and have already seen the specialist. Not great prognosis but my baby’s thickness is at a 3.9mm. I am surprised at how much medical professionals lack hope or try to instill any amount of positivity. Yesterday I wasn’t phased and full of hope but today is different. I am thankful I found this today. I’m very much looking forward to the 18 week anatomy scan and I will praying for a similar outcome as yours. Thanks again for posting.
Ashlee, I hope your appointment went (or will go) well! If I remember correctly, Genny’s fluid thickness was about the same. Waiting is such a tortuous game, especially when your baby is involved. It’s easy to feel broken or somehow like a failure because our bodies are supposed to do this right? But we can’t control what happens to us anymore than the doctor can predict exactly what will happen. No outcome is set in stone, except by the Lord, and trusting in His plan may be the hardest task we have but it can become the most rewarding. Praying for a clean ultrasound for Baby!
Hi Emily- any chance you recall how large your cystic hygroma was? This is our third pregnancy with this issue (1 birth) but it’s also the first time it’s extended the length of the body and measures 11.42mm (larger than any other baby has for us). Just curious since my second child had one in the neck region that resolved and is now a healthy 2 year old so I know these miracles are possible.
Hi Ashlee! Hope all is well. I am currently facing the same issue and was diagnosed at my 12 week appointment last week baby has Cystic Hygroma. Would you be open to sharing your results?
Hi, I’m Monica, I’m 21 years old and 19 weeks pregnant, so far none of my ultrasounds have given good results. Since I was 12 weeks old, my doctor diagnosed Turner syndrome based on the images from these ultrasounds because they had detected that I had a little fluid in my neck. A week later they reviewed me again with another ultrasound which had increased that fluid more than that was when they offered me to perform a study called (CVS) that is performed during the weeks I had, but it has a clear 1% abortion that I refused that test and I wanted to seek options from other doctors, because they said there was no possibility. During that search, she was already 18 weeks old and since then he had not listened to her heart. Then that liquid especially expanded throughout her body inside and outside of her and based on that she was swollen and with too much liquid accumulated in her neck. Today I have 19 weeks 4 days and I am very sad because I did many things to save her and yet it was not possible. Tomorrow I have my abortion appointment 😭 and I feel very bad
Monica, I’m so heartbroken by your story – I know how helpless and sad you are feeling. Turners Syndrome can sound like a scary thing, but people can still live full lives. I don’t know if you are still able to hear your baby girl’s heartbeat, but know that beyond the scary words from the doctor and the statistics that you find on the Internet, even beyond finding out you’ve had a miscarriage, the Lord loves your little baby even more than you ever could. If He’s called her home to Him, then that is what is best for her. I pray you are able to find peace in that, Monica!! It is such a hard thing to understand, and the pain will always be there, but I hope you are able to find peace.
If you ever want to reach out, you can always message me on Instagram @lilmamabearblog and I’ll do my best to reply quickly!
Thanks so much for this words of encouragement am 22weeks and am going through the same thing but my faith is arose by what I read here and I believe in God miracle.
I’m so glad to hear that! Praying you and your family cling to God’s promises and to His plan for your baby!!
I am so glad I came across your post and I read through all the sharings from the other parents.
Im at 14 weeks and around 4 days ago did the ultrasound then followed by CVS the next day. Im still waiting for the genetic results to return.
I was told baby has 5.6 mm fluid around its head and neck but also through the chest, not quite officially hydrots but it’s leading that direction.
I feel hopeless and sad. I had done nothing but cry and pray. Ive been asking people to pray for me, even strangers. I hope I will have enough faith to carry me through. Everyone I know is suggesting termination. They tell me that I am selfish to even think about carry forward, but I cant. How can I give the baby a death sentence when I believe in my heart God will make him better?!
Your post gave me a little bit of light.
Wow I cant believe people would call you selfish at a time like this! It is completely not your responsibility to ensure that no suffering ever befalls your children – trust me, this is a lesson best learned early on! There is no earthly force that can guarantee a certain outcome for your baby, which is so hard for us to struggle with. We always want the best for our children.
Doctors give little to no hope or encouragement in a situation like this, as they often want to avoid “unfavorable” outcomes in their careers. But the truth is your baby needs you right now, no matter the outcome. You are nurturing and protecting that little life and giving it the best chance it has at a future as long as you are able to do so. The Lord already has the best plan of all for your little one, even if that doesnt look exactly as you may have wanted. As hard as it was to lose my baby at 6 weeks (my second pregnancy), I was encouraged by knowing the Lord loves that little life even more than I ever could.
Don’t let people make you feel bad for not giving your baby a chance! They said 2% chance that Genny would be born healthy after being diagnosed with the cystic hygroma, and here she is nearly 5 years old. Through my blog, I’ve known several other mamas who’ve had the same diagnosis, and one of them I still get to see her smiling nearly 1 year old boy on Instagram now and then.
Dont give in to the pressure, give in to God’s grace and comfort during this time. I will be praying for you as well!! Much love!
Thank you so much Emily.
I still have not get my results back just yet but as of now, I carry on.
I still pray and pray. I cry. I speak to the baby and encourage the baby, perhaps myself to trust in God wholeheartedly.
I joined the group at church. I want to be closer to God, even though I know HE has been with me always, being around people that also believe in him gives me comfort.
People told me I am selfish because I seem willingly to let a child suffer when I know s/he will have major issue assuming the baby even made it to term. I dont know that. I keep believing God has the plan. The baby may be completely fine as your Genny or not but regardless the child will be loved by me and God even if no one else.
You give me so much more hope. Thank you
My name is Laura, just had my 12 week scan yesterday and my baby had Cystic Hygroma and already at 7mm thick around the neck. My poor little peanut is suffering and there is nothing I can do to help it. I’m 38 and Peanut was my miracle from the start, I had lots of issues with my womb before all this, and I dropped tones of weight and got better and unexpectedly fell pregnant and we was over the moon after years and years of trying. I did not believe it until I was that 1st scan, there was my Peanut all wriggling and heart strong, but then the blowing news….. Cystic Hygroma!
I have never been so sad and terrified in my life. I always said I would never be strong enough to have a child with a disability, it would break my heart, and now I feel I have brought this upon myself for saying such things, and I am being tested! I sit and wait here today for my scary London Appointment with the University College Hospital in Euston Square.
I am not a God fearing woman, but it has not stopped me saying a few prays this week, I can tell you now.
I am guessing your story has a positive ending, and you have your baby girl to love and hold, I am so pleased for you, and my heart breaks for those why did not have a good outcome, and if I am one of them, I will, be in devastation yet, I will pray my baby is loved, whatever happens. I will never stop loving my little Peanut no matter what.
Love to you all.
I’m so sorry to hear you’re going through this, Laura! With parenthood, there is really no knowing what the outcome will be, at any stage: pregnancy, newborn, college… The only thing we can do is try to let go and trust that God does have a plan for our children. Genny was born without any defects, and she’s now 5 years old. However I know that isn’t always the case. Between Genny and Nora, I had a miscarriage at about 6 weeks. While I didn’t have much time to get excited about that baby, the loss was none the less devastating. I was once again brought to a place where I had to let go and trust the Lord. It may seem odd to trust the Lord when bad things like that happen, but the reality is we don’t have control – and it’s a good thing. I certainly am glad to not have the weight of the world on my shoulders, and the Bible promises that the Lord loves little children more than we have the capacity to here on earth. As hard as it was to know I would never hold my baby, I knew that the Lord’s plan for that child was to bring him or her to heaven before a life on earth. Do I understand? No. Does it still hurt? It always will. But I still have peace.
I can tell you many stories of people I know who have heard doctors tell them bad news only to have the unexpected happen. I’m sure by this point you have more of an idea what you are facing, and I pray you have received encouragement regardless of your circumstances. I know what you mean with feeling scared to have a child with a disability – I felt the same way as well. But God never gives us more than we can handle with His help.
Thinking of you, and praying for your family!
My name is Yoki, and just had my 12 weeks NT scan yesterday. Baby is not cooperating so we are not able to get an NT measure. But on the report we see the concern of cystic hygroma. I’ve been all distracted at work can’t help thinking about what I should do and whether I can see someone sooner to help me with this. I’m hoping I can get your luck and pass it on to my baby – my NIPT result ruled out some genetic defects and I hope next time ultrasound we can get all green lights.
I’m 13 weeks pregnant and my baby has a cystic hygroma 8-9mm with likely pericardial effusion. My doctor is aggressively pushing cvs. I think he’s just doing that so then I’ll want an abortion. I think he’s coming from a place where he honestly thinks it’s best thing for my health to avoid complications to losing the baby in late pregnancy.
But I can’t do it. My baby is still alive and growing. And I don’t want a cvs. What’s the point? He kept saying we’d have more information and “options” but what does that mean? There aren’t options.
We are blessed with a beautiful 13 month old boy who I’m thankful doesn’t understand how devastated we are everyday. I’m exhausted. I’m sick. I haven’t been able to work. And my husband is shouldering most parenting activities, so it’s hard for me to be there for my son.
If baby won’t survive the pregnancy, I’d wish I’d miscarry now. What a terrible wish. But baby is growing and as much as they’re insisting baby has a chromosomal issue that would just be an additional unsurvivable condition- I don’t really care. It’s my baby.
Casey, I am heartbroken for you! Not just because of your diagnosis but because of your doctor’s callous response. I would strongly suggest finding another doctor, one who will respect your wishes and support you throughout your pregnancy.
Do not be bullied into making a decision that you don’t want to make. Your doctor works for you, and if he is no longer doing that, you are amply justified to fire him. There are countless other healthcare professionals who would be happy to take you on.
This is an extremely emotional and volatile time for you as a pregnant mama, you need to be surrounded by support and grace! I am so inspired by your resoluteness and your conviction to give your baby the best chance. You are already such a good mama to that baby.
Be encouraged!! You and your husband are not alone in this. I will keep you and baby earnestly in my prayers.
Hi Emily, are you able to share how large your little one’s cystic hygroma was? Our baby looks identical to yours and we were told she has a hygroma of 11.42 extending the length of the body. We are pending blood work (thus far genetics from blood work is clean) but still have no answers and no hope. I know miracles can happen, hence my son being our miracle but his hygroma was only a 4 at the neck so this one is completely different. Would love to know, really looking to hold onto any ounce of hope.
Sorry to be getting back with you so late, Jess! I pray the hygroma resolved itself! It has been nearly 7 years now, so I don’t remember the size of the hygroma, but it spanned her head to her booty. Clear blood work is a good sign! I pray that the Lord will give you peace and encouragement no matter the outcome of the pregnancy.