In January 2019, Anthony David and his wife celebrated the birth of Alex, their second child. Within 36 hours, Alex’s situation turned serious. David, a Washington, D.C.-based financial adviser, noticed that Alex’s oxygen saturation level was dropping. And it kept dropping.
“More people, nurses and doctors, were coming into his room,” David recalled. “As his level went way down, I was in such despair. I had to step away. I was down on my knees crying.”
Born 14 weeks premature, it was unclear if Alex would survive. He developed an acute brain bleed, spent 126 days in the hospital and sustained significant brain damage.
During that harrowing time, David and his wife Stacy alternated spending time with Alex. Between the two of them, they were able to devote the bulk of their waking hours keeping tabs on Alex’s care and his medical team. “They would monitor his head size,” David said. “They would measure his weight and head circumference every week.”
At David’s request, the nurses shared the measurements and other test results with him. He entered all the data on his phone. “I wanted to make sure I knew everything about my son,” David said.
He urges those whose loved ones are hospitalized to take diligent notes on each care provider (name, date and time of day), what actions they take (medications and dosages they give to the patient, readings from diagnostic tests, etc.) and any ideas, concerns or recommendations they share.
Some doctors might suggest in passing a practical tip that can enhance a patient’s comfort or an experimental treatment, so it’s important to note it at that moment. Anxious family members may be so exhausted that they forget what they hear or misunderstand what they’re told. Paraphrasing what a medical provider says — and confirming that you accurately captured their point — sets the stage for effective follow through.
At the same time, keep doctors on their toes by asking lots of questions. Find out why and how they’re making care-related decisions. “The neonatologist might stop in Alex’s room four- to six times a day for five- to 10 minutes each time,” David said. “I’m there 16 hours a day. So it’s OK to ask questions — and then defer to them. You’re still entrusting the care of your loved one to them.”
It helps to cite the rationale for your question. For example, start by saying, “Based on my observing my baby over the last 12 hours, I’ve noticed…” or “Based on my research, I learned of a possible side effect. What do you think?”
Build a team
When meeting other parents facing a health crisis with their child, David recalled how some of them adopted an adversarial stance with the nursing staff. He favored a different approach.
“You want the medical providers and nurses to know that you respect their expertise,” he said. “You want to establish rapport with them. If you start browbeating them, you lose some of that. If you’re a nurse, and the parent is outright mean and belligerent, would you rather walk into that [hospital] room or walk into a room where the parent is smiling?”
Nurses and physicians rotate through various shifts. Even the best ones can get assigned elsewhere, leaving you to work with newcomers who don’t know the patient. “Ideally, you want someone to provide care who knows your child,” David said.
Partly because of his positive spirit and frequent expressions of gratitude for their care, David found that a handful of top providers sought to remain on Alex’s ward. Soon enough, a core group of primary nurses became devoted to Alex. “We want this kid,” they told their supervisor.
On their own time, they went beyond the call of duty. One nurse presented David with a painting of Alex. Another designed a birthday card for David with a sweet image of Alex. “They become like family,” he said.
Hope and prayer
David also cautions family members to avoid worst-case thinking. Online research can highlight doom-and-gloom scenarios that add stress without serving any productive purpose. “Google can be your worst nightmare,” David said. “You start to think, ‘Oh no, this could happen.’”
About two months after Alex’s birth, David started going to the gym for an hour on most days. He found that caring for his mental and emotional health enabled him to cope with the daily strain.
In addition to exercise and other healthy activities, seek solace in other ways. Accept any help you’re offered, David says, even if you’re tempted to say no. Receiving others’ support not only eases the burdens and shortens your to-do list but also lifts your spirits, especially when you express gratitude for acts of kindness.
On the other hand, avoid naysayers or scolds. Despite their good intentions, some people might overstep their bounds and give unsolicited opinions or lectures on how you should proceed.
“Don’t let others dictate what you should feel or what you should be doing or not doing,” David said. He derived spiritual succor from prayer. Rather than pray for a miracle, he searched for inner strength. “God, give me the ability to handle this situation,” he prayed. “Show me what this is all about and why this is happening.”
He found that this approach enabled him to separate what he could and could not control. It shifted his focus from expectations and medical results to finding effective ways to cope.
Thankfully, Alex’s medical expenses did not prove a distraction. The hospital assigned a social worker to counsel David — and she helped him navigate the flood of incoming medical bills. He learned that once Alex’s hospital stay exceeded one month, a state-administered benefit program would handle the healthcare costs.
Filing the paperwork took time and determination — the Davids were initially rejected — but eventually their application was approved and the bills were covered. David estimates Alex’s total hospital bill was around $3 million.
“When it gets to that level, even having six- to 12 months of emergency cash isn’t enough,” he said. “That’s why if the hospital offers for you to see a social worker, don’t blow it off. They know what resources are available and what [federal and state programs] you might qualify for.”
After the worst days passed, David started to consider outside-the-box coping strategies. One of them involved giving back. “I cold-called the CEO of the March of Dimes and asked, ‘How can I help your organization?’” he said. “I was so determined to turn this into a positive and make sure Alex’s life meant something more.” As a result, he and his wife described their ordeal in a video for March of Dimes.
At various points during Alex’s course of treatment, doctors questioned whether he’d ever walk or eat on his own. Says David: “Today, he walks like a T-Rex and eats like a champ.”