Glimmers of Hope for Baby Jane

Baby Jane faced the fight of her life before she was even born.

Mom Liz went in for her 12-week ultrasound, a routine appointment that ended in a nightmarish way. “They came into the room and said ‘we’re sorry to tell you…’ She was never expected to make it to term,” Liz recalled.

An amniocentesis confirmed that Jane had Turner syndrome, a condition that can cause a variety of medical issues.  “I had conversations with my specialist OB about what I wanted to do [with the pregnancy]…it was awful.”

Liz’s pregnancy progressed as she managed all the emotions that came with the heartbreaking diagnosis and uncertain future. “It was very hard,” she said. “I don’t think I ever fully identified what I was feeling. I had a lot of anger and a lot of crying. And then I finally met with a therapist who worked with NICU and prenatal moms— I remember her using the word grief and it was like a light bulb went off. Of course, I’m grieving.”

Finally, six months into her pregnancy, there was a glimmer of hope. The cardiology team at Boston Children’s Hospital diagnosed Jane with a congenital heart defect called coarctation of the aorta. The good news was that it could be repaired. “It’s odd to say that heart surgery was exciting, but it was the first time we heard our baby’s going to be fine,” Liz said.  

In early August, Adam and Liz finally got to hold their baby girl. They experienced the joy of her birth, but were also apprehensive about her upcoming surgery. Jane was stabilized with medication until she was ready for surgery.

Then the complications started. And they didn’t stop for the next three months.

Respiratory distress, plummeting blood pressure, an emergency surgery. Jane was critically ill, and it was traumatic for Adam and Liz. “She’s tiny, and they’re constantly moving needles around. It’s ugly and awful,” Liz said. “When they started medication that didn’t work, they’d start another medication. It just went on and on. We had around 12 specialists when she left the hospital because she had just gotten so medically complicated.”

Liz was hesitant to let anyone into her private world of pain and grief. Adam’s mom wanted Adam and Liz to start a CaringBridge page for Jane. Adam, Liz, and Liz’s mother-in-law were all receiving questions on how Jane was doing, and they all felt overwhelmed.

When Liz realized that she and Adam would control what was shared and would be in charge of the page, they decided to give CaringBridge a try.

“We wanted people to know it was serious, but we weren’t going to say that we were possibly not bringing her home from the hospital,” Liz shared. “This way, I could control the narrative.”

Liz discovered how therapeutic writing on Jane’s CaringBridge page was. She also found solace in reading the comments during one of the most difficult times in her life.

“Just getting to let people know what was going on and seeing people’s comments was really encouraging,” Liz said. “All these people are thinking about us and care about us. It meant a lot. Especially because it’s long days at the hospital, and it can be so critical, but it can also be lonely at times. [CaringBridge] felt like a connection to people, but without the burden of texting everyone individually.”

Using CaringBridge as a communication platform to stay connected to and update their support network allowed Adam and Liz more time to focus on getting Jane healthy. At three months old, Jane was finally able to join her brother and sister at home!

It wasn’t the last time they’d be in the hospital, and there will be more visits in the future. Jane will need annual cardiologist and endocrinologist visits. However, Jane is doing remarkably well and is a thriving toddler. “She’s incredible,” Liz said. “You would never know [she was sick], except for the scars. She’s active, loud, and has a very fiery, spirited personality.” Her prognosis is good, and her parents and siblings don’t take for granted the time they have together.

“The things that have been really wonderful for us this year are just getting to act like a normal family,” Liz shared. “For a long while, it felt like so much to leave the house because of all the medical supplies needed—it felt overwhelming. Now, it’s just Jane getting to have ice cream with her siblings. That’s what we treasure. The small things.”

Because of Jane’s journey, Liz shifted her career to focus on patient engagement in the rare disease space. “It’s helped me put some meaning to a hard experience,” Liz explained. “Every rare disease is different, but I know the way that these families are pushing and advocating for their kids.”

Adam and Liz continue to update Jane’s CaringBridge page every few months, letting her community know how she’s doing and sharing photos of her life.

Through it all, Jane’s healing continues as she’s surrounded by loved ones.