Family nightmare ends well

Spoiler alert: This story has a happy ending. But it was a harrowing experience for Whitney Fowler and her family.

Whitney (nee Peterson, daughter of Gary Peterson and Trisha Romance) and her husband Jordan Fowler are Niagara-on-the-Lake natives who moved to Cayuga in 2015 to continue to farm, raise a family, and run a cozy community cafe, The Carolinian. They have a young son, John (two and-a-half), and a recent addition in Melody, almost five months old.

This is a story about Melody.

A few weeks ago, Whitney and her friend Jenna spent the day together with baby Melody. One of those simple, innocent days that does nothing to predict the maelstrom that will follow.

When Jordan came home from running the cafe, Whitney and Jenna were chatting and folding fresh laundry. The doting father went upstairs to hold the baby and enjoy their bond. Melody fell asleep in his arms, and Whitney thought he might like to have his phone handy while he held the napping child. Jordan took the phone, and said he thought Melody felt hot. Whitney noticed the baby looked a little limp, and her colour seemed off.

“I just happened to have tidied up our collection of thermometers that morning,” says Whitney, so she knew exactly where to find them. The first reading: 39°C. Panic started to seep into the moment. Second reading: 39°C again.

Whitney decided that if Melody wouldn’t breastfeed, she would take that as an indication that she should take the baby to the hospital. “She had no interest in feeding, so I got her into her carseat and Jenna and I took her to the West Haldimand General Hospital,” the nearest medical facility. By this point the baby was panting.

“As we got her to hospital I had a feeling this was the wrong place to take her,” says Whitney.

The staff at the small-town establishment cooed over the adorable baby, and gave her Tylenol to lower the fever. They didn’t seem overly concerned about the situation, and thought perhaps the baby had a urinary tract infection. Tests were ordered after about 90 minutes — a heel prick for a complete blood count (CBC), and an attempt to collect a urine sample for the UTI. The blood test showed a possible infection, but not what type. The urine collection was a failure due to contamination of the first sample, and subsequently due to Melody’s dehydration: she was too sick to nurse, and so didn’t produce any further urine.

Whitney, Melody and Jenna were at the hospital for several hours, ostensibly waiting for a urine sample from a dehydrated baby. In the meantime, the baby’s heart and respiration rate were elevated, and her fontanelle (soft spot) was raised. Whitney says she could feel the baby’s heartbeat throbbing in her soft spot.

“I thought maybe we should just take her home,” says Whitney.

Like any great tale, this one has a hero, and this is where she appears. A nurse arrived, starting her shift. “She took one look at us and said, ‘You’re going to McMaster [Children’s Hospital] right now,’” says Whitney. The nurse had a doctor call ahead to prepare a team for their arrival. Whitney drove Jenna to the Fowler residence so she could take care of young John when Jordan would go to open up the cafe in the morning, and then drove herself and Melody to McMaster.

“We walked in and right away they swept her into the ER — they don’t waste any time when they see a sick baby,” says Whitney. Within minutes the team of approximately 15 people had set up an IV, a catheter, chest x-rays: “They knew it was an infection and they were looking to determine all of the symptoms,” she says. They confirmed she had sepsis — a life-threatening overreaction to infection.

“I called Jordan at 5 a.m. and told him Melody likely had a blood and brain infection, and she was being wheeled in for a CAT scan,” says Whitney, remembering a very difficult moment no parent would ever want to experience. Jordan left John with Jenna and made his way promptly to the hospital.

The CAT scan revealed a severely swollen brain. A diagnosis of either meningitis or encephalitis was likely at this point. “Meningitis is an infection of the meninges surrounding the brain,” explains the newly-informed mother. “Encephalitis is an infection of the brain itself.” Neither is desirable.

The baby couldn’t nurse; her mother couldn’t sleep. “I was just shaking, and worrying.” While the diagnosis was narrowing down and the 31-year-old mother was feeling more confident about treatment for her daughter, there were still so many questions. “Is it viral or bacterial? Is she going to make it through this? Is she going to have brain damage?”

“At that time her soft spot was like a puffball — which is a good thing because there was room for the swelling to expand upward,” says Whitney. She explains that in older children and adults the swelling presses down into the spine, potentially causing all kinds of damage.

For the first few days the infection was managed but not specifically diagnosed. That final determination was made on day three: a spinal tap was performed to  extract cerebrospinal fluid which would be cultured and studied. “The spinal tap would reveal the bug Haemophilus influenza type A (HIA),” says Whitney. “The more common bacteria to cause meningitis is Haemophilus influenza type B (HIB). Type B we vaccinate for in Canada. Melody was vaccinated for type B. But this did not protect her against A.”

Thanks to the spinal tap, a very specific treatment could be initiated. “They got her on the big gun antibiotic which fought her specific form of meningitis,” says Whitney. They kept the baby’s fluids up and kept her comfortable, and “decided to see how things would play out for the next couple of days,” when an MRI would be done to see how the various parts of Melody’s brain had survived the infection.

“On day five we had a clear MRI, and her brain was back to its normal size,” says Whitney. “A top neurologist came in and put all these cords all over her, cables everywhere — she looked like a little alien baby. They were monitoring seizure activity; there was none.”

“Everything was just feeling more hopeful. We never felt out of the woods though — she was still spiking fevers.”

A cause for the infection has not been determined. “An infectious disease team asked us about everything we had touched, eaten, done. We told them everything to the last detail. Their determination was just ‘bad luck.’”

Whitney’s keenly aware of her good luck, however. After five days in the Paediatric Intensive Care Unit, they were moved into the general paediatric ward. “They say it’s kind of like going from being Kate on the Titanic to being Jack — from a highly modern space with a private nurse to a general ward. It was a bit of a shellshock,” she says. They were in a room with three other families, and were following the sad stories playing out around them. “Their issues were permanent,” she says. “We thought, ‘This sucks for now, but she’s getting better. She’s a fragile little baby, but oh my God, we’ve got it good.’”

At one point Whitney was able to wheel Melody down a hallway with her IV unit in tow. She passed a mother who said, “Oh, are you in for cancer treatment too?” Whitney says her heart broke for the woman and her family. “Sitting in a children’s ward, with families and children going through the impossible… it’s heartbreaking — but beautiful,” she says.

Throughout the 12 days in hospital, Whitney was amazed and touched by the care around her. “You think of a medical situation as being cold and clinical, but they were very caring and sympathetic,” she says. “A lot of things that could have been so hellish, they made better.”

The caring came not only in the hospital itself, but from her own community.

“Jordan would text me all the time to tell me about all the kind things people were doing for us. Our customers were bringing everything, anonymous donors, people leaving money to pay for hospital parking, blankets, letters, meals, prayers, everyone wanting so badly to help, all these amazing things people would do; it was so beautiful to see our community come together,” she says.

“You don’t realize how many people are out there thinking about you at any given time.”

Melody is home and well now, and will receive follow-up screening with a paediatrician regularly to make sure there is no long-term damage. Regarding her medical care, Whitney is divided. She was profoundly impressed by the professionalism and kindness of the staff at McMaster, but remains concerned the symptoms weren’t pieced together by the staff at her local facility. “Her high heart rate, respiration rate and slightly raised fontanelle were signs of meningitis,” she says. “Shouldn’t the doctor have known this?”

The artist and musician says the experience has made her want to do music therapy, “volunteering to sing for kids going through things like this. My guitar has always been a source of healing for me. I write it all into the fabric of life.”

“I could write a book about the time spent there,” she continues, “It opened my heart to feeling something so much deeper than I thought I could feel.”