Genny Bug

Genny's Story: Hope with a Cystic Hygroma

When I was 20 years old, we found out we were expecting our first baby. Of course, we were thrilled and more than a little terrified. There’s just something about knowing you will be responsible for a real, living, breathing human who will be tiny and depend on you for absolutely everything. The words, “You’re going to be a mom,” with all the expectations included with the title, ring in your ears, and worries you never thought you’d have instantly spring up for the weeks, months, forever to come. But this was going to be our child, a perfect mix of my husband and me. So I suppose you could say we couldn’t have been more thrilled AND terrified.

We went to that first ultrasound appointment, giddy with the anticipation of seeing our baby for the first time. I was 12 weeks along. It was the most adorable thing I had ever seen, the little figure wiggling around with a profile as clear as day. I saw my nose and Ryan’s forehead, tiny little feet, a tiny little head… They handed us the photos, and we were dismissed to the lobby to await my doctor. As we sat there, we couldn’t help but stare at the perfect image of our little one. It felt like we were in our own bubble, surrounded with joy and expectancy.

Then that bubble popped.

My doctor came in to my room with a neutral look on her face. “There was an abnormality in the ultrasound,” she said, the words sounding like a different language to me. “The fetus has a growth on its neck called a cystic hygroma.” As we sat there, eyes wide with disbelief, she told us the risk of such a diagnosis and the chance that our baby wouldn’t make it.

It’s one of those things you truly believe will never happen to you. You think, “I’m healthy enough, that won’t happen,” and then it does. There’s nothing you can do about it, nothing you could have done to prevent it. But there is nothing more helpless than knowing that your baby is sick, growing inside of you, closer to you than he or she will ever be, and yet you are completely powerless to do anything about it.

We saw a fetal specialist the next day who confirmed my doctor’s diagnosis. Next they promptly set us down with a genetic counselor. She first asked if we were interested in terminating the pregnancy, and we gave a firm “no”. Whatever the odds, whatever the outcome, whatever pain it would cause us, our baby deserved a chance. She then threw out numbers, statistics, shared some experiences of patients she’d seen throughout the years. None of it really mattered though because it didn’t change the fact that nobody knew what was going to happen.

If you’d like to know what the statistics were, having a cystic hygroma diagnosis during a pregnancy occurs only about .2-1% of the time. Out of this percentage, 65-70% of occuring cystic hygromas are the result of genetic abnormalities. This includes Down syndrome, Turners syndrome, Edwards syndrome, Noonan syndrome, or Trisomy 13.

For the next six weeks, we opted to only have the routine checkups, awaiting the anatomy scan done at 18 weeks. I did have a blood sample drawn that would check for chromosomal abnormalities (specifically, Chromosomes 21, 18, and 13), as well as sex chromosomal abnormalities, but those results would not be available until the same week as our anatomy scan appointment.

Those few weeks were scary for us. We were in constant prayer, sometimes tears. I was still in school, so that helped keep me busy. Morning sickness was in full swing for the first 4-5 months. My emotions were a rollercoaster, and it didn’t take much to set me off. One time I ran into an old friend at school. She asked how the baby was doing, and I broke down into sobs there in the hallway as I told her the situation.

Ryan was strong for me, but he also let himself feel the weight of everything after our first appointment. It was then and there that we had a sober taste of what it’s like to be a parent, to fear for your child but to know that in the end everything is in God’s hands. We had to give up completely, to say “Your will be done,” even if that meant pain for us.

We relied on the support and prayers of so many people during my pregnancy, many of whom we had never met, some of whom we barely knew. People would come up to me all the time and tell me they were praying for our baby. Even now, I meet people for the first time who tell me they were praying for us during that difficult time.

I also turned to blogs and online-forums for encouragement, stories, and data. Not knowing is the hardest when you don’t know the odds, and our odds were a mere 12% chance of being healthy. Still, it helped to hear that there was hope, there were people who had seen the light at the end of this tunnel. There were even people who had lost more than we stood to lose, and they remained as pillars of strength and encouragement to Ryan and me.

Six weeks later, we returned to the doctor’s office, knots in our stomachs, prayers on our lips. The ultrasound technician turned on the screen and spread the gel on my tummy. I could feel the baby squirming around when she applied pressure. And there was our beautiful little one on the screen. Of course we couldn’t tell anything from the ultrasound image. The technician wasn’t permitted to say anything definitive, so we were forced to wait for the doctor. She did ask if we wanted to know what it was, and we did. “It’s a girl,” she smiled.

 He came in the door holding our file and looked at us. This doctor was a fetal specialist, recommended by my personal doctor.“Well if I didn’t know your case history, I would just tell you it looks like you have a healthy baby,” he said.

Ryan and I gaped at him. “What?”

He went on to explain that the cystic hygroma was indetectable, that there were no signs of heart defect based upon the baby’s heartbeat. At that moment, a nurse peeked in her head. “I have the results of the blood test,” she said, smiling excitedly. Everyone in the office knew about our situation because a cystic hygroma is a rare occurance. “It came back negative.”

In the span of about ten minutes, we had received so much information. It took time to process, so the doctors and nurses left the room. Our baby was healthy. It was a girl. And she was going to be okay.

We had two girl names picked out, and Ryan had said he wanted to wait and see the ultrasound again before he decided which name he liked best. There in that room at the doctor’s office, we both said the same name. “Genesis.”

We named her Genesis Grace because of 2 Timothy 1:9 – “He has saved us and called us to a holy life—not because of anything we have done but because of his own purpose and grace. This grace was given us in Christ Jesus before the beginning of time…” Throughout the pregnancy, we had experienced an insurmountable amount of grace. Grace, just as we have always been shown. Grace since the beginning of time.

I don’t know your story. Maybe yours did not end like ours, but I pray you are able to feel the amazing grace of God no matter your circumstance. Maybe you’re going through a valley of uncertainty and worry. I pray that your fears will be quieted in comparison to the mercy and sovereinty of our Lord. Know that there is hope in your situation and that God has a plan for your little one just as He has a plan for you.

I invite you to follow our story, the story of Genny Bug, a healthy little girl who had a 12% chance. Being a parent is hard in this world, and there is no reason why we should try and do it alone.

Love, Ryan and Emily XOXO