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The gift of time – On the pulse

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Colleen and Derek spent the first half of Colleen’s pregnancy like many first-time parents, imagining what their child would be like, reflecting on things they would do as a family, and celebrating a happy new chapter in their lives. .

They never imagined they would have a child with special needs or that doctors predict their baby might not live past childhood. When this became reality for Colleen and Derek, the Seattle Children’s Uncompensed Care Fund gave them the gift they needed most – spending time with their daughter.

“I do not know what to do”

Colleen and Derek first learned that their daughter, Ivy, had health issues during Colleen’s 20-week ultrasound. The technician saw that Ivy’s brain structure was abnormal and the couple were referred to Seattle Children’s. Healthcare 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 sure what this meant for Ivy. Most likely, she would have learning difficulties but would otherwise be healthy. In the worst case, she could have a rare neurodegenerative disease with complex disabilities and a limited lifespan.

“Even thinking of a mild handicap was absolutely devastating for us because it wasn’t what we imagined,” said Colleen. “We had this idea of ​​parenthood and all of a sudden it was thrown out the window. “

“I remember calling my mom,” Derek said. “We didn’t have a name for Ivy yet, so we called her Sprout, and I just cried, ‘Sprout has brain damage, and I don’t know what to do.'”

For the remainder of her pregnancy, Colleen researched the many possible outcomes for babies with missing corpus callosum, bracing for the worst. “We didn’t share the news with a lot of people so I had to do that act like, ‘I’m so excited for this baby! “But really, I was afraid she was born and what that might mean.

To feel that 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 took Ivy to a heated table and began to aspirate her airways.

“I didn’t understand what was going on,” Derek said. “I was like, ‘Am I about to see my child die? “”

Fortunately, Ivy started to breathe on her own and was soon in Colleen’s arms. “She looked good,” Colleen said. “We sighed with relief and thought she would be fine. For one day we had this glimmer of hope.

But in the days that followed, Colleen started to sense that something was wrong. They couldn’t keep Ivy awake to feed her. When she ate, Ivy couldn’t keep the food in place. She was losing weight and becoming dehydrated.

Ivy’s pediatrician sent the family to the Seattle Children’s Emergency Department when Ivy was only 4 days old.

“It was one of the worst experiences of our lives,” Derek said. “I was shocked. I remember after entering the room I went back to the car to get our bag and lost it. I sat in the car and yelled, I hit the steering wheel and I cried.

“On our first stay in the hospital, 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 what she was born to be. It was an amazing moment because it reminded us that Seattle Children’s did not exist just to “fix” our child, but to support her as the perfectly imperfect human that she is. “- Colleen

Everything changes

Over the next four months, Ivy struggled with vomiting, lethargy, battles with suction, breathing problems, and suspected seizures. She received a feeding tube and underwent numerous tests before being 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 various neurological problems.

Many people with pyruvate dehydrogenase complex deficiency do not survive past childhood. Ivy’s healthcare team told Colleen and Derek that Ivy might not be arriving for her first birthday.

Derek and Colleen’s life changed dramatically the moment they learned of Ivy’s diagnosis. Derek left work that day, picked up Ivy from daycare, and told them Ivy wasn’t coming back.

Both parents went from full-time to part-time.

“Knowing that Ivy might only have months to live, we wanted to be home with her as much as possible,” Colleen said.

Indescribable relief

When Ivy’s custody began, a Seattle Children’s social worker encouraged Colleen and Derek to seek unpaid care.

A baby with several sensors attached to the body.

Ivy had an EKG test when she was 1 month old.

“We did not yet fully understand the seriousness of Ivy’s diagnosis, or the pressure her medical needs would place on our family,” Derek said. “But our social worker did. We will always be grateful for that.

Once they applied, 50% of Seattle Children’s Ivy’s medical bills were covered by unpaid care.

“The relief from that initial help allowed our family to focus on Ivy as we cut back on work hours and reorganize our lives,” Derek said. “After a few months, we realized that Ivy’s care needs would only increase over time, and we could never go back to our life before, including having two full-time paychecks to support it. to the needs of our family. “

Derek and Colleen sought unpaid care two more times before Ivy’s first birthday and were ultimately approved for 100% coverage of their medical bills.

Colleen was at work when she heard the news. “I started yelling at my desk. It was an indescribable relief, not only from the financial stress, but also knowing that we wouldn’t have to spend hours on the phone fighting with insurance companies to cover Ivy’s care or trying to manipulate our household budget each month to meet the cost of the huge amount of care she needs, knowing that my child will get the care she needs.

A man in a wooded park holding a baby.

Financial support from the Uncompensated Care Fund gives Derek and Colleen time to do some of Ivy’s favorite things to do, like taking a walk in the park.

Having Ivy’s medical bills covered by the hospital allowed Colleen and Derek to pay for equipment that isn’t covered by insurance, like her wheelchair and a suitable safety bed.

“The financial aid we get is more than money for us, it’s a mental health life jacket and the reason we can try to keep Ivy as normal a childhood as possible,” he said. Derek said. “We have the energy and the time to take him for a walk. We have the money to buy him suitable toys. We have the mental capacity to sift through research material and learn physiotherapy techniques at home so that we can provide the best care.

An immeasurable gift

Ivy is now 3 years old and has far exceeded the expectations of her providers. She is not mobile and sees many providers to help her with a wide range of bodily functions, but that does not prevent her from enjoying her favorite activities like walking in the woods, canoeing with her parents and playing. in a whirlpool tub specially designed by Derek. for her.

She smiles and laughs and is about to sit up and turn around on her own. Next year, she will start attending a developmental preschool.

“For a while, we felt like we were living with a deadline that her illness had set,” Colleen said. “And she crushed that. Every little development we see from her is a gift, and we know there is more to come.

Derek and Ivy say the support they received from unpaid 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 that we wouldn’t have enough time to get to know and love her. “said Colleen. “Ivy’s disease has no cure, and while supporting therapies that won’t cure a child may seem unnecessary, the care Ivy received gave us time that we didn’t think we had. We are infinitely grateful for the gifts that make her care possible and help her thrive. “

You can help families like Ivy’s

Your donation to the Unpaid Care Fund gives families in our area the ability to focus on their child, not the cost of care.

Find out more and donate to the Unpaid Care Fund.