Mia Cervoni naps in her private room at All Children’s Hospital, where she has been living since December.
CLEARWATER – Just looking at the little girl with big brown eyes and huge smile, one wouldn’t know that she’s a very sick baby. That is, except for the fact that she is permanently hooked up to an IV and her home has been All Children’s Hospital since Dec. 30.
Mia Cervoni only just turned 4 months old on Feb. 23, but she has already overcome a lot. Mia needs a new heart. She was born with dilated cardiomyopathy, which is a disease of the heart muscle that affects the pumping of the heart, according to the Mayo Clinic. The left ventricle becomes enlarged and therefore can’t pump blood to the body properly. Mia’s mom, Priscilla Cervoni of Clearwater said that the scariest thing about this condition is that it often doesn’t come with any symptoms until it’s too late.
“That’s the thing about cardiomyopathy,” Priscilla said. “She looks like a normal 4-month-old, but she’s a very sick little girl. … Because we’re here (at All Children’s Hospital) and she’s on all the IV medication, she’s still eating and all of those things. But I think that’s been the hardest part in explaining what’s wrong with her, because she doesn’t look sick. That’s the scary part.”
If Mia was not on her IV medication, she could have symptoms such as trouble eating, loss of weight, tiredness, and failure to thrive, Priscilla said.
Doctors use a special equation and calculation to determine how well a heart is functioning. In a healthy heart, this number comes out to between 45 and 55, Priscilla said.
“Mia’s heart is not functioning the way it should,” Priscilla said. “Hers is 22 today. Today. It fluctuates day to day.”
‘Lightning struck twice’
The Cervonis fortunately found out about Mia’s condition while still in utero, but a prior tragedy is the only reason doctors were even looking for such a problem, said Debbie Ruisz of Largo, Priscilla’s mom.
“My daughter, she had a stillborn on Sept. 19, 2012, and when they did an autopsy on the baby, they found out that the baby had a heart condition,” Ruisz said. “They told her there was a 1 percent chance of it happening again, so she got pregnant again.”
Priscilla’s pregnancy with her son, Gavin Michael, had been normal up until 29.5 weeks, she said.
“Looking back, I woke up and I just wanted to jump out of my skin,” Priscilla said. “I didn’t feel good and that something was wrong. I called my mom and she said just go rest, and the next day I realized I hadn’t felt any movement, and I thought, hmm, that’s weird. And you think of all these things – maybe he just turned a different way. I called the doctor and they were closed for the day, so I went to the women’s center, and they said there was no fetal heartbeat.”
Doctors had to induce her, and she went through 15 hours of labor to deliver her stillborn son. Priscilla, now 34, and her husband, Kevin, now 31, got photos of their son, had him baptized, and five days later had a funeral for him. They chose to have an autopsy done, which found that there had been a problem with his heart. It does not seem to be a hereditary issue, and they still wanted another child, so four months later, Priscilla got pregnant again.
Since she had already had a stillborn child, Priscilla was considered a “high risk” pregnancy, so doctors monitored everything extra carefully, Priscilla said. Everything seemed to be going normally until about 29 weeks when doctors discovered that the Cervoni’s baby girl also had a heart condition.
“I sobbed and sobbed and sobbed,” Priscilla said. “Being that we lost our son, I mean I was almost ready to have him. And having to bury a child is something that no one should ever have to endure. So when we found out that she had it, I bought a fetal heartbeat monitor and prayed and prayed that we wouldn’t lose her.”
Doctors do not know why this happened twice to the same family.
“We’ve had genetic screening done, and basically lightning struck twice,” Priscilla said. “We had no reason why this had happened to us.”
For the rest of her pregnancy, Priscilla had regular echocardiograms and took special heart medication in order to deliver the medicine to Mia. The medicine made her sick, so she ended up sleeping and throwing up a lot. At 38 weeks, Mia was delivered by C-section on Oct. 23.
Waiting for a heart
Mia remained in the ICU at All Children’s Hospital for two weeks and then was able to go home for about six weeks. On Dec. 19, the Cervonis called 911 after Mia had been inconsolable for two straight hours.
“We’ve known since August that she probably would have to have a heart transplant, but we just didn’t know when,” Priscilla said.”
Mia remained at All Children’s until Dec. 26, but she was back on Dec. 30, and there was a transplant team ready to admit her. The infant had lost even more function in her heart, so she has remained at the hospital ever since. She was put on the heart transplant list on Jan. 3, and now it is just a waiting game until a compatible heart becomes available. The average wait time is two to four months, Priscilla said, but sometimes it can even take six months. She tries not to think about it. She just can’t wait until she gets that happy phone call.
But even that isn’t so simple.
Mia’s paternal grandmother, Evelyn Cervoni, said this entire experience has been difficult, but the family supports each other. Though still, she choked up when explaining the conflicting feelings regarding getting a donor heart. Obviously, the whole family wants Mia to get this critical organ, but it is also bittersweet.
“(The situation) definitely pulls everyone together,” Evelyn said. “And having strong faith, because there are days when it feels so overwhelming. And you struggle with the fact that for your child to live and move forward, some other family is going to have to go through the pain of losing a child. And that is something we really had to struggle with. But we trust God’s will.”
For now, as long as Mia can stay on her IV medications, she is doing exceptionally well. She is still eating normally and is not on a ventilator, Priscilla said. And she’s gorgeous, she added. Her mother agrees.
“She’s so sweet,” Ruisz said. “She lives in 4 feet of space, meaning she has a room at All Children’s and it’s her room, but with her wires and IVs, she can go from her crib to her mommy’s lap and to the baby swing and back to play on her tummy. It’s amazing. We’ve watched her grow. She lives at All Children’s, but she has the sweetest personality. When you say, ‘Hello, pretty girl,’ she smiles real big, and her disposition is just as sweet as can be. But when she wants what she wants, she wants it now. They said she could take down a football team.”
Fortunately, Mia has also bonded with the nurses, Ruisz said. As family members, they of course worried about having to leave Mia at night to go home and care for the rest of the family, but it hasn’t seemed to affect Mia at all.
“Mia doesn’t know any different,” Ruisz said. “This is her life right now. And she’s bonded to the nurses and the doctor. He comes in and says, ‘I’m looking for a heart for you, Mia.’”
Priscilla added that Mia’s smile has won over everyone on the floor.
“She has a smile that just warms your heart,” Priscilla said. “She has a grin from ear to ear. She’s so happy to see you. For her being only 4 months old, she’s so strong and just a fighter.”
Despite her setbacks, Mia is ahead of the curve in her development, Ruisz said. She is starting to turn over, and she can sit up if she is propped up. She loves to sit up and look around the room, Ruisz said.
“Thanks to my daughter being able to spend a lot of time with her, she is actually ahead, developmentally,” Ruisz said. “Because that’s one of the things we were worried about, living in a hospital, and her development getting delayed. But she’s right on track. She just needs a heart.”
Cost of a heart
However, organ transplants are expensive. Priscilla said the hospital told her family that heart transplant surgeries can cost anywhere from $1.5 million to $4 million depending on how long they have to wait for a heart and if there are any complications. Fortunately, Ruisz said, the family has insurance, but Priscilla’s husband got laid off in December, so they are keeping their insurance through COBRA. Priscilla is not able to go back to work because she has to spend so much time at the hospital, Ruisz added.
The Cervonis are working with the nonprofit organization, Children’s Organ Transplant Association to raise funds to help with transplant costs. COTA suggested that the family set an initial goal of $50,000, and so far, they have raised a little less than $40,000, said Jim Inman, director of marketing of COTA.
“Our organization was founded to help children and young adults who need lifesaving transplants,” Inman said. “And we help by providing fundraising assistance and family support. We want to make sure that no child is denied a transplant because there is a financial problem. We want to be able to help them get a second chance at life.”
The way COTA works is it first helps to train the family how to fundraise properly and ethically, Ruisz said. All funds raised go directly through COTA, and donors can contribute in honor of specific patients, such as Mia. COTA then distributes 100 percent of the funds to its patient families as their needs are incurred, Inman said. Whereas, if a person donates directly to a family, that can become a taxable event, he said.
“One of the greatest things about COTA is that 100 percent of our funds raised in honor of our patients go to transplant-related expenses,” Inman said. “We do not take any fee for our services. So a donor who makes a $100 gift to COTA in honor of a patient, we provide $100 in assistance for transplant-related expenses.”
The families will then have access to these funds for their whole lifetimes, Inman said. Just because a transplant takes place does not mean that costs stop there, he said. Especially with a baby as young as Mia, she will have lifetime medication and other costs, so this program makes sure she can continue to use this money to help with costs that insurance does not cover.
“Let’s say a family has insurance coverage for the medical side of a transplant,” Inman said. “That’s wonderful, but you still have the family who will be at the transplant center for probably several weeks once the child is transplanted. Mia has been at the hospital since the end of December, so you have to consider that right now. Travel back and forth. The doctor’s visits, the food while they’re there, just a variety of things associated with but aren’t directly covered by insurance. That’s where we want to help kick in.”
The Cervonis have several upcoming fundraisers planned, Evelyn Cervoni said. The first big fundraiser is a garage and bake sale on Saturday, March 8, 8 a.m. to 5 p.m., 98th Ave. N., Pinellas Park. They are still looking for donations of baked goods and items to sell as well. To donate, email email@example.com or firstname.lastname@example.org.
Next, on Saturday, March 15, 5 to 11 p.m., Beef‘O’Brady’s, 13847 Walsingham Rd., Largo, will donate 15 percent of customers’ bills to the cause if a customer mentions “COTA for Mia,” Evelyn said.
Other events will include a carwash, a big spaghetti dinner with silent auction in the fall, and other events.
Priscilla and Kevin also have a 5-year-old daughter, Kylie, so it is a challenge splitting their time between the hospital and home. Fortunately, Kylie and Mia already have a special bond, Priscilla said. Kylie loves going to the hospital to play with her sister, though she especially loves the arts and crafts time that All Children’s provides.
“She wants to come here and see Mia and then she wants to do arts and crafts,” Priscilla said. “We do let her come quite frequently. She comes almost every day.”
In fact, even on days when Kylie doesn’t go to the hospital, she often asks her parents if she can go to play in the kids’ room at the hospital.
Each day, Priscilla gets Kylie ready to go to her VPK program then goes to be with Mia at the hospital. Fortunately, Kylie’s school – which is also their church, St. Paul United Methodist Church – has been wonderful, Priscilla said, and even though her class is only for half a day, they allow Kylie to stay all day if needed, even without advance notice. Priscilla usually leaves the hospital between 5 and 7 p.m. to go home and be with Kylie and her husband as well as try to get household chores done. Weekends are harder, when Kylie has to come along with her to the hospital.
All of the hospital staff is required to wear facemasks and are under protected isolation to ensure Mia has the most sterile environment possible, Priscilla said. The family is not required to be under protected isolation, but the Cervonis have opted to have even the family wear masks at all times around Mia to ensure that she won’t get sick before her transplant.
“I don’t allow anyone except my mother and (my husband’s) mother to see her and come into the ICU because they all have kids, and kids are full of germs,” Priscilla said. “I don’t want her to get sick prior to transplant because if she gets sick and gets an offer for a transplant, then we might have to deny it.”
Instead, they take lots of pictures and videos of Mia to send to family members, she said.
“I always joke that her first debut will be on her first birthday,” Priscilla said.