Charlie entered the world sporting a shock of jet black hair. His tiny ears were “pinch-me” cute, just like his mom’s.
But when Charlie arrived, doctors immediately noticed he couldn’t breathe well and his midsection swelled like an engorged water balloon.
“I heard them say the baby needs resuscitation,” said his mother, Nicole Wheeler, who at the time was immobilized and groggy from her Caesarean section surgery. Although complications had arisen during the pregnancy, the last few weeks before birth had gone well, and they were expecting a healthy boy with Down syndrome.
But minutes after the birth, the news turned dire.
“As they were putting me back together, the doctor told me that my baby had cancer,” Wheeler said.
She panicked, and hyperventilated. Doctors gave her calming medication.
A blood test administered shortly after birth came back positive for leukemia.
Charlie’s life would be a fight, from the moment he was born Nov. 20, 2012, two days before Thanksgiving.
But he was a strong baby.
“I never lost hope. I never gave up,” Wheeler said.
She touched Charlie once briefly on the head before nurses whisked him into the intensive care unit.
HIGH SCHOOL SWEETHEARTS
Wheeler and her life partner, Nick Bowie-Haskell, shared their story with the Press Herald – a story of how the young family dealt with their child’s battle with leukemia and liver damage and what happened after his death. They’re turning their personal tragedy into a time to help others – one year after Charlie died – by starting a fundraising campaign for the Maine Children’s Cancer Program.
The events started to unfold last year, when the couple decided it was time for another baby.
Both natives of South Portland who have been together since they were high school sweethearts, the two became parents when they were 22, young and naive.
Now in their 30s and at a stable time in their lives, they wanted to have another child, since they were older and wiser.
“We were finally ready,” Bowie-Haskell said, smiling.
Bowie-Haskell is a videographer who wears winter hats indoors and has a calm voice, while Wheeler is an education tech with auburn hair and a wide smile. Their son Jack, 9, loves turtles, while daughter Jenna, 7, is into dolls. They play well together but can get into fights like siblings do.
“They’re best friends and worst enemies all at the same time,” Wheeler said, chuckling.
The family lives in the Willard Beach area of South Portland, minutes from both sets of grandparents. They go on lots of family outings, days filled with hiking, skiing and swimming.
Their busy house includes a dog, two cats, a rabbit and a turtle, with family pictures seemingly in every room.
Charlie’s photo sits on the mantel above where the wood stove used to be.
LIVING ‘IN A FANTASY BUBBLE’
Like many, the Bowie-Haskell family lived as if nothing could go wrong, the “invincible” feeling when everything, for the most part, goes well for years.
“You can live in a fantasy bubble where bad things don’t happen,” Bowie-Haskell said. “We were in that bubble.”
They breezed through Wheeler’s first doctor’s appointment at 12 weeks of pregnancy.
“We went to the appointment like veteran parents. I never even thought that something could go wrong,” she said.
Charlie’s due date was Dec. 25, so they bought a Santa chalkboard, and every day they counted down 100 days to Christmas and the birth of the baby.
“It was very exciting for the kids. That’s when Santa’s coming and that’s when your baby brother is going to be here,” Wheeler said. “Because his due date was Christmas, people joked with us that he was the baby Jesus.”
Wheeler started having some complications during the pregnancy, including finding out that the baby had Down syndrome, and the presence of hydrops, an abnormal collection of fluid.
However, in the last few months of pregnancy, doctors told the couple the hydrops could no longer be found, and they believed the abnormalities originally detected had cleared up. They thought they were on their way to a healthy birth.
“I was so hopeful. Maybe he was just a miracle because he kept overcoming these things,” Wheeler said.
Charlie was born a few weeks early, but his problems were not related to premature birth, the couple said.
Dr. Aaron Weiss, of the Maine Children’s Cancer Program with Maine Medical Center, one of the doctors who worked with Charlie, said that while they could detect Down syndrome, they didn’t know the baby had cancer prior to birth. Weiss said there was no way to detect the extent of Charlie’s health problems.
“This would be a very difficult diagnosis to make in utero,” said Weiss, one of a half-dozen doctors who cared for Charlie.
One in 830 U.S. children is born with Down syndrome, and only a small percentage of those babies are born with leukemia, according to the National Cancer Institute.
“Something is only rare if it doesn’t happen to you,” Bowie-Haskell said.
Once Charlie went to intensive care at Maine Medical Center, he had to be on a ventilator at all times while doctors determined how to treat his leukemia. Charlie also suffered from liver necrosis, a damaged, swollen liver that endangered his life.
“From the very beginning, his chances weren’t that good,” said Weiss, who estimated a less than 10 percent chance of survival. “But it wasn’t a situation where he had no chance. We had to make decisions pretty quickly.”
Pictures taken at the time show a family with mixed emotions – Wheeler looking wistfully into an intensive care unit with tubes covering her son; Bowie-Haskell holding the baby while displaying a wan smile; Wheeler holding her son close and Jack and Jenna, her children, with puzzled expressions watching Charlie. Nicole ate her Thanksgiving dinner in the hospital, still recovering from surgery.
But they still got to hold and love their baby, sometimes for hours at a time. They would watch as nurses used a syringe to deliver their days-old infant chemotherapy treatments.
“He never cried,” Wheeler said. “He had such positive energy and love.”
“He handled the treatments very well, and was very strong,” Bowie-Haskell said.
They got into a rhythm, where the two would take shifts going to the hospital, tending to Charlie.
Bowie-Haskell said even though it was difficult, they had hope.
“There was always a sense of optimism. It wasn’t all doom and gloom,” he said.
“We didn’t have any other option than to have hope,” Wheeler said. “We had two kids who needed us to be strong.”
TIME TO SAY GOODBYE
Two weeks passed as the couple settled into their routine. It was difficult to tell how treatments were going, but they said the chemotherapy would help with the leukemia, yet at the same time damage their baby’s liver. Every day brought worry, but they remained hopeful.
One day in early December, Bowie-Haskell was at the hospital late at night, but things didn’t seem to be going as well. Charlie was uncharacteristically fussy, and his oxygen levels were spiking downward.
Bowie-Haskell said the nurses didn’t tell him specifics, but he could sense an unsettling turn of events. He decided to go home before his “shift” ended.
“I realized I was losing hope that he would live,” he said quietly. “I was feeling overwhelmed.”
Once home, he told Wheeler, without elaborating, that she had to go to sleep.
“I knew we were in for a difficult day ahead,” he said.
The couple fell asleep, only to be awakened at 3 a.m. Dec. 7.
“We were told it was time to come in and say goodbye to Charlie,” Wheeler said, tears welling in her eyes.
Charlie had been moved to a large ventilator so that he could breathe, but the machine shook his tiny body with every breath.
Wheeler said doctors told them Charlie’s body was filling with fluid, and that he would die either from the fluid buildup or by not being able to breathe. They had to choose whether to take him off the ventilator.
Wheeler said they knew they had to end Charlie’s suffering and remove the ventilator, but it was hard to know when to do so. A few hours passed, and she approached Charlie.
“I really believe in soul connections, and I walked up to Charlie and said, ‘Charlie, give me a sign that you’re ready.’ At that moment, he opened his eyes, looked at me and blinked quickly three times,” Wheeler said, dabbing her eyes with a tissue.
She gave the sign, and doctors removed Charlie from the ventilator and gave her her baby, 17 days after his birth. Charlie immediately stopped breathing.
“It was all too much, so I handed him to Nick,” she said.
In his father’s arms, Charlie’s heart stopped beating, and he died.
“There’s a certain amount of beauty to it,” Bowie-Haskell said softly. “To share that moment with another soul. It was hard, but such an honor.”
AFTER CHARLIE’S DEATH
The couple had to tell their children what had happened. While Jack and Jenna knew that Charlie was sick and could die, it hadn’t completely sunk in, they said.
They took the children to Bug Light Park on a sunny day with clear blue skies, uncommonly warm for December.
“That was the second-hardest thing to do, to tell them their baby brother had died,” Wheeler said. “Jenna immediately started crying and Jack punched the lighthouse and was really angry. He had lots of questions about death.”
The next day, the children asked their parents when they were going to have another baby.
“Kids are so resilient,” Wheeler said. “They just roll with it.”
Christmas was right around the corner, and the next few weeks were a blur. A day after Charlie’s death, they went to a tree-lighting ceremony. Relatives and friends brought them food and gifts to put under the tree because they didn’t have much time to buy Christmas gifts.
Instead of a star, they put a Santa hat that Charlie had worn on top of the Christmas tree.
“We tried to make Christmas as normal for the kids as it possibly could be,” Wheeler said.
But on Christmas Day, while celebrating at her in-laws’, she started feeling overwhelmed.
“I sat on a bench outside for two hours and sobbed. People were trying to be normal and making small talk. I just couldn’t be normal,” she said.
17 DAYS OF CHARLIE
Days and months went by, and the couple went to counseling to help deal with Charlie’s death.
“They embraced their grief and dove into it versus trying to run away from it,” said Elizabeth Murray, a licensed social worker with the Maine Children’s Cancer Program. “They had amazing skills dealing with a loss of this magnitude.”
Every month, they release balloons at Bug Light Park in Charlie’s memory.
They also collect hearts found in nature after an inspiring trip to Bradbury Mountain.
“We were hiking on Bradbury Mountain, and I said, ‘Please, God, give us a sign,’ ” Wheeler said. “I looked down, and saw a piece of bark that looked like a heart. It was from Charlie.”
Two tree stumps shaped like hearts are displayed in their living room, and the children especially have enjoyed looking for “hearts from Charlie” over the past year.
In March, they went to the Bahamas but couldn’t escape the sadness.
“We went on a trip to one of the most beautiful places in the world but we still couldn’t be completely happy. There’s always something missing,” Wheeler said.
Seeing other families with young babies was difficult, and people tended to avoid them in the months after the death.
“People couldn’t deal with me talking about it, but I couldn’t see pretending like he never existed,” she said.
Murray said feelings of isolation are common because most people can’t imagine and haven’t experienced losing a baby, so it becomes difficult for people to relate. That means people are more likely to avoid talking about it, Murray said.
“There’s no opportunity to be really understood because people haven’t had a similar loss,” she said. “But Charlie lived, and he will always be with them.”
Wheeler said she doesn’t want to “get over” Charlie’s death, in part because her son’s life has enriched them spiritually.
“He was meant to be ours, and to be in this world only 2½ weeks,” she said. “When I’m having a crappy day, I think if Charlie can make it through a day, I can make it through.”
They started a fundraising campaign called “17 Days of Charlie,” with proceeds to benefit another family and the Maine Children’s Cancer Program.
While the fundraiser helps others, they say it’s also therapeutic so they can stay busy and focused instead of walling themselves off from the world. Every day for the 17 days Charlie lived, through Dec. 7, they sell raffle tickets and give away prizes, such as tickets to events or groceries. All prizes have been donated. They also share a personal moment from Nicole’s diary that she kept when Charlie was in the hospital.
“I wanted to not feel completely sad at this time of year,” Wheeler said.
The couple said they’ve decided to, in the near future, try again to have another baby. No, they’re not scared. And don’t ask them when they’re going to get married, Nicole said, laughing.
“We’re so grateful for the experience of Charlie,” Wheeler said. “We had him 17 days, but whether it was 17 days or 55 years, he brought so much into our lives. We have so much to be thankful for.”
Joe Lawlor can be contacted at 791-6376 or at: