Colleen and Derek spent the first half of Colleen’s pregnancy like many first-time parents, imagining what their child would be like, musing about things they would do as a family and celebrating a joyful new chapter in their lives.
They never imagined they would have a child with special needs or that doctors would predict their baby may not live past childhood. When that became Colleen and Derek’s reality, Seattle Children’s Uncompensated Care Fund gave them the gift they needed most — time with their daughter.
“I don’t know what to do”
Colleen and Derek first learned their daughter, Ivy, had health concerns during Colleen’s 20-week ultrasound. The technician saw Ivy’s brain structure was abnormal, and the couple was referred to Seattle Children’s. Providers there confirmed Ivy was missing her corpus callosum, a bundle of more than 200 million nerve fibers that connect the right and left sides of the brain.
Doctors weren’t certain what this meant for Ivy. Most likely, she would have some learning difficulties but would be otherwise healthy. Worst-case scenario, she could have a rare neurodegenerative disease with complex disabilities and a limited life span.
“Even thinking about a mild disability was absolutely devastating to us because it wasn’t what we’d imagined,” Colleen said. “We’d had this idea of parenthood and suddenly that was thrown out the window.”
“I remember calling my mom,” Derek said. “We didn’t have a name for Ivy yet, so we were calling her Sprout, and I just cried, ‘Sprout has brain damage, and I don’t know what to do.’”
For the rest of her pregnancy, Colleen researched the many possible outcomes for babies with a missing corpus callosum, preparing for the worst. “We didn’t share the news with a lot of people, so I had to put on this act of like, ‘I’m so excited for this baby!’ But really, I was terrified for her to be born and what that might mean.”
Sensing something was wrong
Ivy was born in October 2018. After 36 hours of labor, she came out and immediately turned blue. A neonatal intensive care team whisked Ivy to a heated table and started suctioning her airway.
“I didn’t understand what was happening,” Derek said. “I was thinking, ‘Am I about to watch my child die?’”
Thankfully, Ivy started breathing on her own and was soon in Colleen’s arms. “She looked okay,” Colleen said. “We took this sigh of relief and thought she was going to be fine. For one day, we had this glimmer of hope.”
But in the days that followed, Colleen began to sense something was wrong. They couldn’t keep Ivy awake to feed her. When she did eat, Ivy couldn’t keep food down. She was losing weight and becoming dehydrated.
Ivy’s pediatrician sent the family to Seattle Children’s Emergency Department when Ivy was just 4 days old.
“That was one of the worst experiences of our lives,” Derek said. “I was in shock. I remember, after we got into the room, I went back to the car to grab our bag and just lost it. I sat in the car and screamed and hit the steering wheel and cried.”
“During our first stay inpatient, when Ivy was only a few days old, a provider looked us in the eyes and said, ‘Your baby is perfect. You know that, don’t you? She is exactly who she was born to be.’ It was an incredible moment because it reminded us that Seattle Children’s existed not just to ‘fix’ our child, but to support her as the perfectly imperfect human that she is.” — Colleen
Over the next four months, Ivy struggled with vomiting, lethargy, battles with aspiration, breathing issues and suspected seizures. She got a feeding tube and underwent many tests before she was diagnosed with pyruvate dehydrogenase complex deficiency — a rare mitochondrial disease in which lactic acid builds up in the body, causing nausea, vomiting, severe breathing problems and a variety of neurological problems.
Many individuals with pyruvate dehydrogenase complex deficiency do not survive past childhood. Ivy’s care team told Colleen and Derek that Ivy might not make it to her first birthday.
Derek and Colleen’s lives changed dramatically the moment they learned of Ivy’s diagnosis. Derek left work that day, picked Ivy up from daycare and told them Ivy would not be coming back.
Both parents went from working full time to part time.
“Knowing Ivy might only have months to live, we wanted to be home with her as much as possible,” Colleen said.
An indescribable relief
Early in Ivy’s care, a Seattle Children’s social worker encouraged Colleen and Derek to apply for uncompensated care.
“We didn’t fully understand the gravity of Ivy’s diagnosis yet, or the strain her medical needs would put on our family,” Derek said. “But our social worker did. We will always be grateful for that.”
Once they applied, 50% of Ivy’s medical bills from Seattle Children’s were covered by uncompensated care.
“The relief of that initial assistance allowed our family to focus on Ivy while we cut hours at work and rearranged our lives,” Derek said. “After a few months, we realized Ivy’s care needs were only going to increase with time, and we would never be able to go back to the way our life was before, including having two full-time paychecks to support our family.”
Derek and Colleen applied for uncompensated care two more times before Ivy’s first birthday and were eventually approved for 100% coverage of their medical bills.
Colleen was at work when she got the news. “I started bawling at my desk. It was an indescribable relief, not just from the financial stress, but knowing we wouldn’t have to spend hours on the phone fighting with insurance companies to get Ivy’s care covered or try to manipulate our household budget each month to accommodate the cost of the massive amount of care she needs — knowing my child’s going to get the care she needs.”
Having Ivy’s medical bills covered by the hospital made it possible for Colleen and Derek to pay for equipment that isn’t covered by insurance, like her wheelchair and a special needs safety bed.
“The financial assistance we receive is more than just money to us, it’s a mental health lifejacket and the reason we can try to pursue as normal a childhood as possible for Ivy,” Derek said. “We have the energy and the time to take her on walks. We have the money to buy her adaptive toys. We have the mental capacity to sift through research papers and learn home physical therapy techniques so we can provide her with the best care.”
An immeasurable gift
Ivy is now 3 years old and has far surpassed the expectations of her providers. She is non-mobile and sees many providers to help with a wide range of body functions, but that doesn’t keep her from enjoying her favorite activities like walking in the woods, canoeing with her parents and playing in a hot tub Derek made especially for her.
She smiles and laughs and is close to sitting up and rolling over on her own. Next year, she’ll start attending a developmental preschool.
“For a while, we felt like we were living with a deadline her disease had set,” Colleen said. “And she’s crushed that. Every bit of development we see from her is a gift, and we know there’s more to come.”
Derek and Ivy say the support they’ve received from uncompensated care has changed their lives.
“When Ivy was diagnosed, we thought she only had months to live, and the thing that hurt the most was thinking we wouldn’t have enough time to get to know her and love her,” Colleen said. “Ivy’s disease doesn’t have a cure, and while supporting therapies that won’t cure a child may seem pointless, the care that Ivy’s received has given us time we didn’t think we had. We are endlessly grateful for the donations that make her care possible and help her thrive.”
You can help families like Ivy’s
Your gift to the Uncompensated Care Fund gives families in our region the ability to focus on their child, not the cost of care.
Learn more and donate to the Uncompensated Care Fund.