Mom learns baby will die, chooses to cherish pregnancy
By SHARI PUTERMAN
Mar. 03, 2018
LAFAYETTE, La. (AP) — "There was a larger purpose for his life, beyond us ."
Melissa Decell, 33, speaks these bittersweet words about her son, Clark. He was born on Aug. 4, 2017, at Lafayette General Hospital, weighing just over 4 pounds.
On that very same day, he also took his last breath.
But this baby's legacy spans far past the short time he spent on Earth.
Before the storm
Melissa and her husband, Ryan, met in 2012 and hit it off from the start.
Two years later, they got married and settled into a simple south Louisiana life together.
"We were both 30," she says. "And our careers were pretty set. I was working as a social worker for Lafayette General, and he worked for Bell Helicopter. We knew we wanted to start a family right away, and three months after getting married, I found out I was pregnant."
On Oct. 8, 2015, Melissa gave birth to a healthy baby girl named Olivia.
"We didn't have a clue what we were doing," she says, "but that's pretty much like everyone else. She was a great baby, and we had a lot of support around us. She slept and did all the things she was supposed to do. There were no major issues, and life was really good."
Almost a year later, the couple started talking about expanding their family, as they wanted their children to be close in age.
But then, tragedy struck.
The great Louisiana flood of August 2016 turned their world upside down, and for the next five months, they were displaced from their Lafayette home.
"They had to gut our house," Melissa explains. "About 160 homes in our neighborhood flooded."
They lived with Melissa's parents while rebuilding until January 2017.
"And that's when I found out I was pregnant again," she says. "We were excited - it was good timing because we were getting back into our house, and we felt like it was a new beginning for a lot of things."
The early part of her pregnancy was easy. Melissa and Ryan were settling back into their "normal" routines, and things were moving along as expected.
But when they went for her 16-week checkup, their world was once again flipped.
During her appointment, Melissa requested an ultrasound to determine the baby's sex.
"We knew the staff from our previous pregnancy," she says. "We knew the technician, and she was joking around with us about gender reveals. She was poking and prodding, and told us the heart rate, but right into it, she started to cough and excused herself from the room . I knew something was wrong when she didn't come right back."
The technician returned with a doctor, which immediately signaled a red flag.
"She was asking if I traveled outside the country recently, which I didn't, and if I had any high fevers," Melissa recalls. "Because of what I do for a living, I knew she was asking Zika virus questions. I finally said, 'What's the matter? What's wrong?' "
The doctor explained that, although Zika was ruled out, their baby's skull development looked abnormal. The head was missing a big curve, and she suspected some type of neural tube defect. Melissa was referred to a maternal fetal medicine specialist.
"Before we left," she says, "I could immediately see on ultrasound that it was a boy. We did ask if we were looking at a disabled child, or losing the pregnancy, and what the prognosis was. She couldn't give us answers . we were really excited and sad, too, because we were really hoping for a boy. I pictured how excited we would be when we got the news . and it was just a totally different experience."
The next day, they saw a specialist and Melissa got a very detailed ultrasound. The doctor confirmed a diagnosis of anencephaly, a serious birth defect in which a baby is born without parts of the brain and skull.
"Most of that visit was a blur," Melissa recalls. "I knew that, worst case scenario, it was going to be a terminal diagnosis. We asked a lot of questions - and the doctor said, 'I assume from what you're asking me, you're going to continue the pregnancy.' It was never even a choice. We could see his heartbeat, him moving on screen . he was already our baby."
They decided to name him Clark.
The doctor told them that, if the pregnancy went full-term, he would only likely live minutes, hours or days, at best.
"For us," Melissa says, "that was enough hope, of meeting him alive. Even if we got to meet him for one minute, it would be worth it."
At that point, there were five months remaining in the pregnancy. Melissa and Ryan left the appointment numb.
"We walked out and stood in the parking lot next to our cars," she recalls. "Ryan said, 'Are we going to be able to do this?' We didn't know, but we had the same attitude - we just need to keep going. If we went to that sad, dark place, how do you ever get out of it? I was still pregnant, I had a little girl at home, and she needed us to be OK. So we decided that we would just get through every minute, every hour, every day, and just go with it."
A larger purpose
That night, Melissa mentioned an article she saw about a family from Oklahoma.
Their daughter was diagnosed with the same condition, and they were looking into organ donation.
That's when Melissa and Ryan decided to do the same.
"That was kind of when the seed was planted for us," she says. "After talking to LOPA (Louisiana Organ Procurement Agency) and reviewing everything, we decided that was the way we were going. That decision changed everything for us. It became a big thing of hope, that we would be able to really have a positive impact even though we knew the outcome."
Shortly thereafter, the family went to Build-A-Bear, where the they had Clark's heartbeat placed inside a stuffed animal. They did it on Father's Day, and almost one year later, their daughter still asks for the bear on a regular basis.
"We did it so that we can always have the memory," Melissa says. "And doing it on Father's Day made it really special for my husband."
Meeting their baby boy
At 32 weeks along, doctors became concerned with Melissa's low level of amniotic fluid. Three weeks later, they decide to induce labor due to potential risks.
On Aug. 4, Clark was born.
"He was alive," Melissa explains. "We held him, we got him dressed, and one of the deacons baptized him. He lived for 59 minutes. One of the biggest anxieties I had was that, if he was born alive, I wouldn't want anyone else to hold him because I didn't want to share him. But it was the complete opposite. I wanted everyone to have their moment with him. Of course, there were tears, but it was very calm - it wasn't overshadowed by sadness. There was still lots of joy that Clark was here."
The family was able to spend three hours with their son after he passed. At that point, he had surgery for organ recovery, but they still wanted more time with their baby boy.
Thanks to a special device, they were able to keep him overnight and into the next day.
Lafayette General had something called a CuddleCot, which lowers a baby's temperature to preserve their physical appearance after death.
"From a parent's perspective," Melissa says, "we still want that time with our babies even after they pass. To make those memories, to have that time. From a social worker's perspective, we serve a huge volume of families, and we need more than one CuddleCot. In order to serve the community as best as possible, we should be able to offer as many comforts to families facing this loss. That's when we decided that we need to raise money to have more than one (CuddleCot) for the hospital."
The Decell family works closely with the Lafayette General Foundation (LGF), whose role is "to find and connect the pieces, people and processes with our resources, our supporters and our heads and hearts."
Development Officer Chrissy Thompson is helping to coordinate a fundraiser that can raise awareness about organ donation and help bring more CuddleCots to families at the hospital.
"(LGF) Executive Director Cian Robinson suggested that the foundation could help spread the word," Thompson says. "Whatever funds are raised, the foundation will match these dollars. When you hear (Melissa and Ryan's) story, you get the feeling that a woman going through this can gain a sense of purpose - that this loss is not simply a loss but it could give life. Once you accept the impending loss, having a sense of purpose to go on and to give life in another way . it's absolutely overwhelming. When you look at the gift they gave through the loss of their son, it's truly amazing. They give a sense of hope to families facing the worst news they can get. Seeing what she's done, you realize it's not all lost."
The Decell family also works closely with Maddie's Footprints, a nonprofit organization that provides support to families coping with miscarriages, stillbirths, or the loss of an infant.
"We were lucky," Melissa says. "We did a lot of our grieving before Clark was gone. Lots of families don't get that time. The CuddleCots could add comfort to what is a really terrible and sad situation and one that happens all too frequently."