‘The One in a Million Baby’: Mom’s Story of Parenting a Child With Complex Disabilities

October 9, 2019 Updated: October 11, 2019

New Zealand mom Tessa Prebble’s daughter Eva was born with complex disabilities. Sadly, the little girl passed away at the age of 10 months.

The bereaved mom faced the unbearable challenge of getting on with life without her baby girl. But Tessa found strength in the knowledge that her story could help others. She then produced a series of podcasts that featured the journey of parents with their rare children.

In an email interview with The Epoch Times, Tessa regaled her story of being a mother to Eva.

Eva enjoying the sun at her home in Wellington.

The Days After Baby Eva’s Birth

Baby Eva was born on April 6, 2014. Pregnancy had brought with it a “rollercoaster of issues,” Tessa recalled. “When [Eva] was born she was blue and floppy and not breathing properly,” Tessa said. “She was whisked away to the special care unit.”

In the days that followed Eva’s birth, the baby girl was given a working diagnosis of the genetic CHARGE syndrome, which can herald life-threatening medical conditions in infants. Eva was diagnosed deaf-blind, with low tone, a hole in the heart, and a thin or absent corpus callosum, the part of the brain that joins the two hemispheres together.

“There were all sorts of scary diagnoses based on her first brain MRI which said she had a smoother than normal frontal lobe,” Tessa said. “I remember asking the doctor what the frontal lobe did. He said ‘thinking.’ It was terrifying and devastating.”

Tessa at her apartment in Wellington City, in front of photos of Eva before giving a speech at a Rare Disease Day event in 2016.

“When Eva was born,” Tessa continued, “I had very fixed ideas about what made a ‘good life’ and what quality of life meant. When Eva’s diagnoses rolled in one after the other when she was just a few days old, it really got in the way of our bonding.”

Tessa soon realized, however, how little Eva’s diagnoses mattered. “Eva was a person,” she said. “A whole person. Not a broken person. She loved and was loved, and despite enduring long hospital stays and a future of surgeries, she had a very good quality of life.”

All the time spent with her baby girl was “just like any mother and baby.”

Eva showing off her tummy time skills at her in-home daycare provider’s house.

Raising a Baby With Complex Disabilities

Tessa described a typical day with her daughter. Eva would wake up Tessa over the baby monitor at 5 a.m. for a tube feeding through her nasal gastric tube.

At that time, the mother-daughter duo was living at Tessa’s good friends’ house with their own 6-month-old baby. “I would often be up early in the morning with the dad,” Tessa recalled, “quietly and sleepily drinking coffee together with both the babies.”

One of the highlights of most days with baby Eva was lots of stroking and touching. “Touch was Eva’s main sense without hearing and sight,” Tessa explained. “Much of our time was either spent with her in my arms, or her rolling on the floor. She responded to touch and lit up when you stroked her face.”

Unlike most mothers and babies, however, Tessa and Eva spent a lot of time at the hospital.

However, after about 9 months, Eva went to an in-home daycare so that Tessa could go back to work. During those days, Eva spent time with her little friends.

Eva and Tessa at a New Plymouth beach on their first summer holiday together.

Losing Eva

Eva spent a few months in and out of hospital experiencing respiratory distress then enjoyed three months of seemingly good health. Tessa described both Eva’s diagnosis and her internal health issues as “complicated” but dealt with every bout of her baby’s sickness with strength and stoicism. What happened next, however, was a tremendous and devastating shock.

Eva’s breathing became raspy. “I thought she was probably starting to come down with something,” Tessa recalled, “but it didn’t seem too serious. Then that night, she just stopped breathing.”

Tragically, Eva passed away in February of 2015 from the sudden illness. It was just two months before her first birthday. “The autopsy revealed she had the very early stages of pneumonia but we couldn’t tell that from her symptoms,” Tessa shared. “It was very sudden, unexpected, and devastating.”

After Eva died, her doctors discovered that her frontal lobe was normal after all. “It reminded me that doctors are doing their best but they don’t know everything,” Tessa said, “especially with a rare case like Eva’s.”

Eva kissing her blue bunny made by her aunty, and lying on a sheepskin at her home she shared with her mother and another family.

After Eva’s sudden passing, the grieving mom was faced with some difficult questions. “I remember someone asking me if I was relieved, which was a horrible thing to be asked,” Tessa recalled.

But memories of Eva provided comfort. “Some of my favorite [memories] are from the summer she was doing so well,” Tessa shared. “It was a hot few months, and when I got home from work I would fill up a bucket in the back yard and give her a swim/bath. She loved the water.”

During this period, Tessa also worked as a high school teacher, but the consuming distraction of work was temporary. “I would get in the car at the end of the day and sob over the steering wheel,” she said.

Eva having a much needed cool bath after a hot day in February 2015.

Rediscovering Purpose in the Midst of Grief

Knowing that her story could help others, Tessa eventually was prompted to start a podcast. The grieving mom called the project “a really big part of my healing process.” Tessa produced a grand total of 36 “The One in a Million Baby” podcasts about people who find out their child has a disability or complex medical needs and how they come to cope with it.

However, the mother explained that she produced podcasts for about three years and then “hung up my headphones.”

“I felt I had done what I set out to do; I had created a library of resources for parents to listen to and feel less alone,” she shared.

Eva enjoying some dog time at her in-home daycare provider’s house.

Her key advice for all those parents who have had to face a similar situation as hers is threefold: “Let yourself grieve,” Tessa says, “reach out to people in the community, [and] don’t isolate yourself.”

For Tessa, “Eva changed me dramatically.” She also added though, “It wasn’t her job to do that, but she did.”

Now, almost five years after Eva’s death, Tessa is pregnant again. “I wish she could be here to meet her new brother or sister,” Tessa expressed. “She’s not, but I know I will be approaching so much of motherhood differently than before.”

“I was so lucky to be her mother,” she added, remembering the baby girl who brought so much to the world in her short but precious life.

Photo courtesy of Tessa Prebble ( WebsiteFacebook )