Cystic Hygroma: Cate’s Story of Hope

Cystic Hygroma | Cate's Story of Hope | helloHOPE

Jacqueline and Josh Johnston didn't think much of it when they were referred to a perinatologist early on in Jacqueline's third pregnancy. Assuming this must be a routine precaution, they were both unprepared for the news they received: their baby's first sonogram had shown a life-threatening cystic hygroma — a fluid-filled sac on the baby's neck.

Their doctor scheduled a chorionic villus sampling, or CVS, which would hopefully tell them more about the health issues their child faced. She had not been encouraging, telling them that the chances of survival, whether in utero or post-delivery, would be less than one in two. She urged them to consider terminating the pregnancy due to that fact that even if their child should live, they would face a host of illnesses and complications.

Processing the Cystic Hygroma Diagnosis

Leaving that first appointment with the perinatologist, Jacqueline and Josh felt numb. "It was the worst day of my life," Jacqueline remembers. "But we had promised [our two young sons] that we would bring home pictures of the new baby. I decided on the drive home that day to make it a party, because I didn't know how else to get through the night." They stopped to purchase a cake and balloons, then returned home to celebrate the family God had given them.

Diagnosis Day | helloHOPE

“I felt sick, as you can imagine," Jacqueline says, "and our five year old asked me why I wasn’t eating cake. I said that I was full and he said, ‘Well, this party is about our family, and the baby’s in our family, and the baby can’t have cake if you don’t eat any.’ And so I ate cake. That was the last thing I wanted to do, but it was one of the glimpses of hope that I had in those first few hours: my son was bringing the baby to life.”

After putting their children to bed, Jacqueline and Josh sat down to research the information they had been given. Googling their baby's diagnosis further revealed the frightening reality that they faced. "It was the longest night of my life," Jacqueline says.

Josh also remembers the intensity of that night, and the mix of emotions he encountered as they waded through the search results. "As a dad you can always fix things, and this wasn't something I could fix. [I was] sad, angry, hopeful, fearful."

Facing the Unknowns

Confronted with a burden that was too big to bear alone, the Johnstons turned to prayer. “We have to text everyone we know and ask them to pray that this baby’s cystic hygroma will disappear,” Jacqueline told Josh. At the time, so early on in the pregnancy, most of their friends and family did not even know they were expecting, but they messaged them with a bold request: “We need you to pray right this moment that our baby’s cystic hygroma will disappear.”

Jacqueline recalls, “My second prayer request that night was that we would be able to get some rest, because we still had to be a mom and dad the next day. And I remember just crying and sending all these texts and believing — I really believed from the very first prayer that when you ask you will receive. I didn't know what I was going to receive. I didn't know if I was going to receive a cleared cystic hygroma or peace about the situation. My hope was both.”

Two days later, Jacqueline underwent the CVS procedure. After two hours and completing the sampling twice, the Johnstons had been given a list of all possible worst case scenarios, but had heard no mention of the hygroma. When Jacqueline asked the doctor about it she was told that no hygroma had been found. “It was there two days ago, I just can’t find it today,” the doctor said. “So I can’t comment on it, but they don’t disappear this fast.”

Jacqueline recognized immediately that this was God's doing. “It's not that I didn't believe her but I knew, ‘This is God answering our prayers.’ That I was 100% confident about; whether or not the hygroma was there was not the point. And that was the launch pad for me diving head first into telling anybody and everybody I knew about God's ability to do anything and fix anything, and not to believe the world but to believe his promises. I was so bold during that time … I would talk to anyone and everyone about it. I felt so empowered to do so.”

Finding Strength

The Johnstons walked through this period of uncertainty supported by the faith and prayers of their friends, small group, family and neighbors. They asked everyone they knew to pray with them, regardless of whether or not they shared the Johnstons' hope in Christ.

"And we prayed together more than we had before," Jacqueline adds. "We already prayed together very consistently, but we were more intentional, more deliberate, more bold in our prayer life together. I think that was the glue that held us together … we realized we could lean into each other and be each other's best friend, or [we could let this] drive us apart."

Not only did their robust prayer life allow them to remain strong as a couple, but it helped them to find peace and remain anchored in their faith that God was lovingly caring for them even when things looked bleak. Josh regularly reminded his wife: “God already knows who is in our family. He already knows who this child is. That’s not going to change. We are going to have the child we are meant to have.”

The power of this hope sustained them as the weeks wore on and they waited to learn what would happen to their baby. “Most days I felt a peace that just didn’t make sense to anybody else,” says Jacqueline.

At the beginning of her third trimester, Jacqueline and Josh revisited the doctor who had been unable to find the hygroma through the CVS. The doctor performed a scan, then left the room to read it and examine the results of Jacqueline’s final blood test. When the doctor returned to the room, she told the Johnstons that what she was seeing did not make sense, and asked to perform a fetal echocardiogram.

After an extremely careful exam, the ordinarily brisk doctor placed a hand on Jacqueline’s knee and said very gently, “My goal today was to see if there was any progress, and I don’t see progress.”

Jacqueline felt her heart stop before the doctor continued, “I see perfection. There is no cystic hygroma. There are no birth defects. The heart looks perfectly fine. The brain looks perfectly fine. I've looked at this baby inside and out and I can't find anything." With tears in her eyes she said, "I've never seen this. I've been doing this for 30 years. I've never seen something like this. I just don't have any explanation."

Jacqueline responded, “This has been God's baby from the beginning. It's still God's baby and it always will be. We have faith that however this baby is supposed to be born, she will be born." The doctor replied, "I don't believe in that type of thing but I have no other explanation, so it must be."

Welcoming Cate

Welcoming Cate | helloHOPE

At 39 weeks and four days, Jacqueline delivered Cate, a healthy baby girl. The Johnstons anxiously looked for any signs of sickness in their daughter, but she appeared to be perfect. It was hard to believe at first. “It was almost like I was looking for something to be wrong,” Jacqueline says. “I literally had to hand that over to God daily, sometimes hourly, for the first month of her life, and say to him, ‘She was yours. She still is yours. She will always be yours. And I trust her with you.'”

Looking back on the pregnancy now, the Johnstons see how their hope in Christ and the prayerful support of their friends, families, and one another carried them, allowing them to live boldly, share their faith with others, and intentionally seek joy.

“I had to bring joy to the table at every opportunity, because if I didn’t, I was afraid of the kind of mom I would be. So we went out for ice cream more than usual—we tried to do fun things [with our sons] and remind them of God’s love for our family … I knew God had a beautiful side to our story. Whether we were going to see that this side of heaven or not, I knew that there was going to be beauty again, eventually. Trusting and knowing we would get there was what hope looked like for me.”

Thank you to the Johnston family for sharing your beautiful story of hope and faith with us!

Johnston Family | helloHOPE

Headline and family photo credit: Lily and Sparrow Photo Co.

About the Author

Catie Cummings-Morris is a freelance author specializing in non-profit work and food writing living in Chattanooga, Tennessee, with her husband, daughter, and a vegetable garden.