Andrea Heichelbech has cystic fibrosis. She wasn’t supposed to live past 30 and she wasn’t supposed to ever have children. This Mother’s Day, she is one blessed woman. She is 31 and has a baby girl named Vivian Rain.
When her friends would talk about getting married and having babies, the sadness would set in. Andrea Heichelbech would force a sweet smile.
Good for them. Awesome for them. That would never be her life.
Dating wasn’t happening. Heichelbech had a line she gave to men who asked her out.
“Don’t waste your time. I’m going to die, anyway.”
Babies definitely weren’t in her future. Heichelbech had been told since she was old enough to remember that she couldn’t have children. She shouldn’t have children.
Not in her condition.
And yet, on this Mother’s Day, there is an 11-month old baby girl named Vivian Rain.
And 31-year-old Heichelbech is beaming.
Vivian is her baby, the baby she conceived and gave birth to after having a double-lung transplant at IU Health Methodist Hospital.
The baby that made her a mother – against all odds.
When her parents brought Heichelbech home from the hospital in 1987, they quickly knew something was wrong. Heichelbech cried all the time. She wasn’t gaining weight.
When four months passed and things didn’t get better, her parents took Heichelbech to Riley Hospital for Children at IU Health.
There, they received devastating news. Their baby girl had cystic fibrosis. She was failing to thrive. Her life expectancy, in a best-case scenario, would be 19 or 20 years.
Cystic fibrosis is a progressive, genetic disease that causes lung infections and, over time, limits a person’s ability to breathe. A thick, sticky mucus builds up in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and, eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
As Heichelbech hit her teenage years and then into young adulthood, the lung infections got more frequent. So did the hospitalizations.
She knew when things were getting bad. It would feel like a 10-ton weight was in her chest. Her energy level was low. In the hospital, she would be on IVs for two weeks to get the infection out of her lungs.
It would work for a bit and then the sickness would set in again. And then it got so much worse.
In January of 2014, doctors told Heichelbech there was no other option but for her to get new lungs.
“The day I was listed, I was relieved. I just knew that getting the new lungs, it would be a better life than what I had,” she says. “I remember telling my mom and dad, ‘Even if I have the new lungs just a month before I died, it would be worth it.’”
Heichelbech was living with 18 percent lung capacity. She could barely walk 10 steps. She had to be carried everywhere she went.
She was on four liters of oxygen per hour and, at night, six liters. She was a young woman in her 20s stuck at home, stuck to a pole.
“I had prayed to God to take my life,” she says. “That’s how miserable I was.”
James Gustin was 20 when he met Heichelbech. She was 17. His band was shooting a music video and Heichelbech and her friends had agreed to be some extra bodies in the filming.
Gustin instantly fell for Heichelbech and wanted to date her. They talked now and then, but Heichelbech gave him her standard response.
Her life expectancy was 29 or 3o. He shouldn’t waste his time on her.
And so the years passed and Heichelbech grew up. She decided dating might be OK. She would get a boyfriend every now and then, but quickly shy away. It was always in the back of her mind – her mortality.
But then came that December day when Heichelbech got the call. There was a set of lungs for her. On Dec. 13, 2014, Heichelbech received the transplant surgery.
Without the transplant, Heichelbech most likely would have died, says David W. Roe, M.D., a pulmonary critical care physician at IU Health and Heichelbech’s doctor.
Heichelbech couldn’t believe how good she felt after getting her new lungs. She could breathe and walk. She didn’t need oxygen.
And so two years ago, when Gustin and her crossed paths again, she took the chance. The two started dating.
And then came the unexpected. Not long after going on a cruise together, Heichelbech found out she was pregnant.
“I was shocked and scared and emotional,” Heichelbech says. “I just had so many different emotions.”
It seemed like it should have been a joyous occasion, a baby on the way for Heichelbech. But there were so many issues to consider. This would be a high-risk pregnancy.
Heichelbech’s own health could worsen drastically. And a lot of the medications she was on could be detrimental to the fetus, Dr. Roe says. The baby might be born with genetic abnormalities or physical malformations.
Dr. Roe brought together a team at IU Health – specialists in obstetrics, transplant, high-risk maternal fetal medicine, pharmacology and others. Together, they planned a course of action.
Throughout Heichelbech’s pregnancy, they tweaked medications and monitored antibodies that could attack the baby or Andrea’s new lungs.
On June 15, 2017, Vivian Rain was born – a healthy baby girl.
Inside her Lafayette, Ind., home this week, Vivian woke up from a nap – smiling and squealing, clapping and giggling.
She blew bubbles with her dad and gave kisses to her mom.
“She is always so happy,” says Heichelbech. “She is always smiling, just the happiest baby.”
Maybe, just maybe, Vivian knows how lucky she is to have her mom around — and what odds the two beat together.
— By Dana Benbow, Senior Journalist at IU Health.
Reach Benbow via email firstname.lastname@example.org or on Twitter @danabenbow