Congenital Heart DefectsCystic HygromaD&EFetal HydropsStoriesTurner Syndrome

A Different Kind of Strength

our baby had hygroma and hydrops

The doctor came in with a very sympathetic demeanor and started saying words like cystic hygroma and hydrops and fatal and miscarry and chromosomal issues. We completely lost it. “What do you mean?” I wanted to scream. I just saw a normal happy little moving baby on that screen a few minutes ago.

By Jaclyn

When our daughter was just 6 months old, we found out we were pregnant again. I’m not going to lie, I was horrified. I was still breastfeeding, trying to juggle being a new mom, working full time, and adjusting to marriage as a parent. Although I reminded myself daily how fortunate I was not to have fertility issues, I was still so anxious about the thought of two babies within 14 months. My daughter’s birth was beautiful and uneventful—something I never took for granted. Being a NICU nurse and an aunt to two kids with cystic fibrosis, I’ve always been extremely hyperaware of almost every single negative possibility- even in the most ideal circumstances.

With my first, I was a complete and total negative Nancy/worrywart—whatever you want to call it. I paid out of pocket for advanced testing to make sure nothing was wrong. I tried to avoid getting attached. When I finally held her in my arms, I could not believe she was here and she was okay.

Early on, I looked at my second pregnancy as an “inconvenience,” not the right time, something I wasn’t ready for because I still hadn’t lost all of my baby weight. I look back now and am so nauseated with myself and my selfish thoughts.

This time, I didn’t worry

At our 7-week confirmatory scan is when the universe hit me with a dose of reality. The tech placed the probe on my belly and did not say a word for what seemed like a lifetime. I finally asked her if everything was okay. She said she could only see a gestational sac and nothing else. I panicked. Feelings of guilt consumed me. She said she’d try an internal ultrasound. I told my husband something wasn’t right, as this did not happen with our daughter. She inserted the probe and I prayed to God to please let our baby be okay. Immediately, she turned the screen to us and said, “There it is! There’s the heartbeat!” Phew. That’s when I knew how much I actually loved this baby and realized how grateful I really was for this blessing.

After that, my attitude completely changed. But I still did not worry like I did with my first. Honestly, I don’t think I had enough time to worry while raising our 6-month-old, working full time, and did I mention we had just bought a house?

February 20th, less than one week from when we settled on our first home together, we went into our 12-week scan full of excitement to see our baby. We decided that we wanted to know the gender this time and were so excited for when we would be able to know if our baby girl was having a little brother or sister. The scan was pretty uneventful—we saw this little bean jumping and moving all around and we looked with such joy, making our guesses whether it was a boy or girl.

Cystic hygroma and hydrops

The tech seemed pretty unfriendly and was not responding or chiming in with anything we said. I figured she was having a bad day. She printed out one picture for us and said the doctor would be in shortly. I knew something was wrong. With our first, they printed out at least six different pictures for us and a doctor never needed to come in the room.

The doctor came in with a very sympathetic demeanor and started saying words like cystic hygroma and hydrops and fatal and miscarry and chromosomal issues. We completely lost it. “What do you mean?” I wanted to scream. I just saw a normal happy little moving baby on that screen a few minutes ago.

The doctor scheduled a CVS appointment for me three days later without my consent. She said I could cancel if I wanted but it was better to have the appointment made. We left the office in uncontrollable tears. The waiting room was full of pregnant women looking at us in confusion and sympathy. Infuriated, I pictured them rubbing their healthy perfect baby bump thinking, poor girl, glad that’s not me.

Over the next two days, I Googled every single success story I could possibly find about cystic hygromas and hydrops. Though very few, I prayed to God to be one of those stories. I read a couple of stories with babies having Down syndrome that has similar issues in utero and were born healthy other than the T21. I read about some hygromas completely resolving on their own with no genetic issues. I pictured over and over again going into our next appointment and the doctor saying “I’ve never seen this in my career, but the fluid is completely gone!” Even though I knew in the depths of my soul we wouldn’t be the lucky ones.

My heart sank

On Monday we went in for our CVS, with a different doctor this time. They did an ultrasound beforehand and during the procedure to help guide the needle to the placenta. He placed the probe on my belly and said “wow, it’s significantly worse than it was on Friday.” My heart sank. He said that the fluid was all over the abdomen, throughout the lungs, and likely in the heart but it was too early to tell. He said I’ll probably miscarry within the next couple of days and seemed shocked that I hadn’t already. I was in a daze. I cried during the procedure, not because of pain but because of the unknown.

We also sat down with the genetic counselor that day. She was kind and very informative. She said our baby most likely had Turner Syndrome or Trisomy 21. I (stupidly) thought to myself okay great, as long as it’s not incompatible with life. I went home praying for a miracle.

A naïve dream

Three days later I got the call at work. I almost made my coworker answer the phone because I was so nervous. The genetic counselor told me our baby had Turner syndrome. When I sighed with relief I could tell she thought I was crazy. She was so sad about telling me the news and all I could say back was “So, it’s a baby girl!” At the time, I just was relieved to know it wasn’t an “incompatible with life” condition.

It’s funny, isn’t it? How quickly you begin bargaining with the universe/God. A week ago, I was most concerned about finding out the gender and secretly wishing for a baby boy. Now I’m relieved to hear that my baby girl doesn’t have a “fatal” genetic condition. It’s almost comical how quickly our minds spin during times like these. I could do this (I thought). I called my husband immediately and all he could say, through tears, was “I just feel so bad for her.”

I had a day or so in this naïve, dream world about the baby before it was time for our next ultrasound. We had decided that we would keep having weekly ultrasounds to track the progression of the hygroma and hydrops. Each appointment the news grew grimmer. The fluid was worse, she was moving less, and more issues were presenting. At my final ultrasound, the doctor came in and said, “There’s something wrong with your baby’s heart, I can’t visualize all 4 chambers.” He said he couldn’t say for sure what cardiac defect it was but that it was most definitely there and probably not compatible with life by itself, let alone with all of the other issues the baby had.

The hygroma was about as big as she was at this point, and the fluid had almost taken over her lungs and bowels. He brought up the possibility of terminating and I said “I can’t do it knowing that there’s a chance.”

“I feel very confident that there is no chance,” he said. “I would say remote to none at this point.”

My heart was crushed.

On top of everything, we were in the middle of the COVID-19 pandemic so I had to go to all subsequent appointments on my own. It was devastating to go alone and cry alone week after week. I felt very isolated. Even though a few close family members and friends knew about the situation and were very supportive, I could tell a couple of them were not in favor of termination. How could I blame them? I never was either.

I felt like a hypocrite

Here I was, a nurse who literally dedicated my life to saving babies’ lives—sometimes even when it may be more merciful not to save them. How could I be such a hypocrite? How could I continue doing the job I do, knowing I’d terminated my own baby? Would doing this make me less of a mother? These thoughts haunted me. I read so many blogs of parents who carried their babies with conditions not compatible with life for as long as God allowed. They went through labor and delivery and watched their baby die moments to hours later. They seemed calm and strong in their decision to do so. These stories tormented me. I wanted so badly to be like them. I wanted to want to carry my girl as long as she wanted to go.

The fact of the matter was that I wasn’t like those parents. I couldn’t carry my baby who was slowly dying. I couldn’t bear to go to any more ultrasounds alone to receive the same dreadful news week after week. I couldn’t keep going to work pretending to be okay. I couldn’t keep barely making it out of bed on my days off and doing the bare minimum as far as taking care of my daughter.

24 hours of hell

On April 2, 2020, at 17 weeks and two days, I went in for my two-day D&E procedure. We had to travel to a different state (fortunately, still close by) and I had to go alone, once again, for the laminaria insertion because of COVID-19 precautious. I cried through the entire procedure. I hated being without my husband and I hated knowing what I was doing. It was 24 hours of hell. Not physical, but extremely hard emotionally and mentally, knowing it was the last day with our girl inside of me. I felt her kick for the first time and I couldn’t tell if she was telling me “It’s okay, Mom” or “Mom, look! I’m still here and I’m still fighting.” Those couple of kicks felt so amazing and so deeply heart-wrenching at the same time.

The next day, I returned to the hospital where sat naked under a gown on a bed in a very busy pre-op area waiting to be seen. Finally, I was set up with an IV and told it would be very soon. They assured me they would call my husband to pick me up as soon as it was over. I did okay for a while. But when it was time for me to go in and there were suddenly four people around me, I had a panic attack and started sobbing. That’s the last thing I remembered was being surrounded by strangers, crying my eyes out in my most vulnerable state.

Feeling numb

I woke up and felt my belly. It was over and our baby was gone. I haven’t cried much since that day. I don’t think I knew how much I was torturing myself every day she was alive, struggling with this life-changing decision. I had cried and grieved every day since we found out something was wrong with our baby. Now that she was gone, I felt numb. I don’t feel remorse about our choice but I don’t feel super confident about it either. Hopefully, time will help the feelings of uncertainty pass.

We named her Julia. I feel very fortunate that we were able to get her tiny footprints in a memory box.

We are every bit as strong

After reading almost every story posted on this site, I realize that there is a different kind of strength that goes into the decision to terminate. We are no better or worse than parents who chose to carry until nature runs its course—we are just simply different. And who knows, maybe under different circumstances those parents could be us or we could be them. We all need to go on believing our decisions were right for us and our families.

While reading a lot of stories on this site, I noticed many women felt confident from the beginning about their decision to terminate and I am truly happy they are at peace. But I wanted to share my story and feelings for anyone who still feels guilt or uncertainty about their choice. It may not be a story with a peaceful “everything has come full circle” ending— in fact, it’s quite the opposite. It’s extremely messy and raw. Nonetheless, it’s my story and I have hope that something beautiful will come from it one day.

 

Photo by Wan San Yip on Unsplash