Carolina Panthers punter Andy Lee sat in a chair in a busy Starbucks on a drizzly March Tuesday in Myers Park.
He was crying.
His wife, Rachel, patted his knee softly, her own large brown eyes brimming as Lee pressed his index finger to the side of his throat to help force his words out.
They were strikingly and palpably close in that moment, a private cocoon of sorrow and support in the midst of a city’s mechanical coffee shop routine.
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There were strangers all around – one, to Andy’s right, trying very hard to hide behind his book, one just behind him and the reporter he had only spoken to twice before in front of him, watching him break down.
Rachel and Andy lost their daughter, Madelyn Elizabeth, in 2015 just eight days after she was born in Charlotte.
Andy’s was the sudden, swelling sorrow that bursts out of a parent who has suffered such a tragedy, sometimes triggered by small things, in front of strangers. He was considering aloud the tradition of a father-daughter dance in the South, and the thought had occurred to him that he would never be able to give Madelyn away at her wedding.
The grief still comes in waves – and out of nowhere, at times – as the Lees try to balance moving forward with honoring Madelyn’s memory.
A few days ago, Rachel was driving her two young boys through Charlotte when they passed by the Novant Presbyterian Medical Center, where Madelyn had spent her eight days of life in the neonatal intensive care unit (NICU).
“Why didn’t they just save her?” Ryan, just 7 years old, asked.
On January 27, 2015, Rachel had to have a C-section at that hospital because Madelyn, only a few weeks early, was breech (meaning she was not poised to enter the world head-first, and instead had flipped around).
“She was still almost full-term, so we were nervous, but I still wouldn’t call it an emergency,” said Rachel.
Once Madelyn emerged from surgery, instead of the loud crying that symbolizes a new life meeting the world, there was silence. Madelyn had swallowed some fluid and it was in her lungs, and had to be rushed to the NICU.
“They took her. … They put a tracheal tube in her,” said Andy. Rachel couldn’t see what was happening, and the Lees were not able to see Madelyn for several hours as the hospital staff worked to regulate her breathing.
“All of this equipment … I don’t think a lot of people know what all goes on (in the NICU),” said Rachel. Madelyn was on a C-Pap for breathing and a feeding tube. Andy said her tiny side had been punctured to let the fluid out.
They spent a few days in the overnight parent room adjacent to the NICU, exhausted, and were heading back in to see Madelyn when, as Rachel described it, a “storm” seemed to pass over them. Madelyn’s white blood cell count was irregular, and the doctors discovered an infection. They gave her antibiotics, which escalated quickly into blood and platelet transfusions. She seemed to improve, and doctors were optimistic. Rachel and Andy were terrified, but hopeful.
On the sixth and seventh day, Madelyn seemed to be better and the Lees decided to run home for a few hours to check on their young sons.
“Looking back, there was so much going on and I think, I don’t want to say we were blinded by optimism, but you don’t want to think that the worst will happen,” said Rachel.
They had been home for just three hours when they got the call.
“It was the middle of the night. It was very quiet. We spent time holding her and…”
Rachel trailed off. She and Andy told their sons the next afternoon.
After their mourning period, the Lees were faced with the little reminders of Madelyn that appeared everywhere they looked.
“I’d say the hardest thing is after the fact,” said Andy.
For him, it was the paperwork as he watched his daughter’s life flash so quickly by him in a series of black-and-white documents. The Lees had to get a birth certificate for Madelyn, but also a death certificate. She had to be placed on the family’s insurance for hospital bills and funeral arrangements, but then she had to be removed.
For Rachel, the pain came in fresh waves for weeks whenever she saw the scar from her C-section and as she underwent the constant need to pump out the breast milk that had arrived in biological preparation for her daughter.
“That’s another thing people don’t think about,” said Andy. “Her body was ready to care for a child, and the child was gone. But she still had (the breast milk).”
“That was really hard, because that was a physical reminder that I should have a baby,” said Rachel.
When the hospital bills arrived a month later, they brought another reminder. Another swell of grief.
With Andy’s NFL salary as a 13-year veteran punter (he was most recently acquired via trade by the Panthers in 2016 after a year in Cleveland, and spent 11 years of his career in San Francisco), the Lees didn’t have the same type of financial stress as many families might face when receiving those bills.
“We were sitting at dinner and we thought, ‘Gosh, can you imagine how we feel right now, and then on top of that, feeling the stress of all of these expenses if you couldn’t afford it?’” said Rachel.
The average NICU daily cost is $3,500 per infant, and the average NICU stay is 32 days – or $112,000 total, according to the American Medical Association’s Journal of Ethics.
“You don’t research that or think about it until it’s in your lap. We didn’t know,” said Rachel. “When we found out, we thought that there was no way a lot of people could afford it. And we felt like that shouldn’t happen. There has to be a way that we can help.”
So they created Madelyn’s Fund, a non-profit designed to support NICU families at every stage of the process, including families who experience the trauma of losing a child. This includes the little details, like providing car seats or cribs, paying for training for out-patient procedures or even gas cards for some families who need to travel to visit their child in the NICU.
With Madelyn’s Fund, the Lees want to shoulder some of the burden that families who go through similarly tragic experiences feel. When hospital bills or, in the worst cases, funeral expenses, arrive on those massive swells of grief, Madelyn’s Fund exists to ease that added stress.
The foundation’s inaugural “pink bow gala” will be held on May 19 at the Charlotte Country Club and is already sold out (as is Andy’s charity golf tournament benefiting Madelyn’s Fund). A donation page has been set up on the charity’s site, madelynsfund.org, and anyone can give.
The Lees have already helped several families with various needs, including funeral expenses for a sixth family in the last four months, and are assisting their 23rd NICU family since the foundation began.
“This is just starting,” said Rachel. She believes as the foundation grows and as word spreads, they will be able to expand the variety of assistance they can provide to families.
“I didn’t think about this. I didn’t know about this. You don’t know until it happens to you,” she said.
“You never would imagine what it’s like until you go through it,” added Andy. “If I had not have gone through it, I would never have known what people who experience it really need.”
“Just to help with life in general, after,” said Rachel.
In their creation of Madelyn’s Fund, Andy and Rachel have discovered new ways to lean on each other through Madelyn’s memory.
“I think this has made us talk about it more,” said Andy. He also changed his jersey number to No. 8, to honor the days the Lees spent with their daughter.
“I love that Madelyn’s Fund gives us that open dialogue,” said Rachel. “We are saying her name multiple times a day...”
Andy chimed in, squeezing Rachel’s hand. “We aren’t just thinking about her all the time. This means we actually are able to do something for her.”
Madelyn’s Fund Mission Statement: To support NICU patients and their families, including those who experience the trauma of infant loss.
Founders: Rachel and Andy Lee, in honor of Madelyn Elizabeth, the daughter they lost.
Upcoming event: Pink Bow Gala, May 19 at the Charlotte Country Club (sold out)
How to Donate: http://www.madelynsfund.org/donate-now_copy/