BONIFAY — The community is rallying around baby Madison Champion, a 5-month-old who’s living up to her name as she fights a congenital heart defect.
Madison got off to a bumpy start in life back in August when she was born four weeks early due to pre-eclampsia. Parents Paige Dault and Will Champion thought the excitement around their new daughter’s health was over until new symptoms arrived.
“The second week she was home, she would turn blue and cough really bad and act like she was running out of breath,” said Dault, 22.
The couple took Madison to the emergency room for the first time when they noticed she looked blue around her mouth and between her eyes. Dault said doctors were perplexed and told them the baby likely had something viral, along with an upper respiratory infection. They were discharged the same night, but still felt uneasy about not having an explanation for why their daughter’s skin looked blue.
Dault made an appointment with a pediatrician, who then gave a much different observation. After looking Madison over with a trained eye, the doctor spotted hallmarks of a heart murmur and referred her to a cardiologist.
It took several weeks to get an appointment with the specialist. In the meantime, Dault said Madison’s condition continued to get worse. She was unable to keep formula down and was not growing or gaining weight.
“A failure to thrive is what the doctors called it,” Dault said.
Madison spent her first Christmas in a Panama City hospital after her lack of feeding prompted her parents to take her to the emergency room again. Madison was severely dehydrated and admitted to the hospital for a few days until she was well enough to return home.
Dault and Champion managed their daughter’s sickness the best they could at home until their first appointment with the cardiologist on Jan. 27. After a full battery of cardiac tests, the parents were told their daughter had been born with a failing heart.
Madison was diagnosed with ventricular septal defect, a fairly common congenital disorder in which a baby is born with a hole in the heart.
In fact, Dault was told her daughter had two holes and the right side of her baby’s heart and liver were enlarged due to congestion and having to work extra hard to compensate for her failing heart.
Madison was immediately scheduled for the heart operation she received on Feb. 4 at UF Health Shands Children’s Hospital in Gainesville.
Surgery was complex. Dault said the surgeon had to break the baby’s sternum and cultivate surrounding tissue to patch the holes in Madison’s heart. It was a terrifying for the young parents, knowing their daughter had received blood transfusions and saw her afterward still under the affect of sedation and attached to every imaginable means of life support.
“I cried. Every time I heard Will say, ‘I’d take your place if I could, Mad Mad,’ I’d cry again,” Dault said.
Madison pulled through the surgery and is now home recovering. Dault said she’s already noticed some of her daughter’s signs of heart failure improve. Now that the coughing has subsided and Madison can keep formula down, Dault hopes her five-month-old will eventually weigh more than a full-term newborn.
“She hasn’t hit 10 pounds since she was born,” she said.
Caring for the infant post-surgery is challenging. The parents must keep the surgical incision clean and dressed and be vigilant to not lift Madison or burp or rock her in a way that could impede her healing.
Doctors hope this is the only surgery Madison will need, which will be determined with time and how well she heals from the first operation. Either way, Madison will have a diagnosis of heart failure for the rest of her life.
“She’ll never be able to do anything strenuous,” Dault said. “I was told she’ll never be able to run track or join the Army.”
Money has been extremely tight for the family. Madison’s medical expenses are fully covered by Medicaid, but the couple of three years is scrambling to stay afloat otherwise.
Dault had to stop working during her difficult pregnancy, and Champion was laid off from his logging job in November. He recently got back to work operating a skidder for a different logging company, and Dault hopes to find work as soon as Madison is healthy enough for daycare.
The couple gets around in a borrowed vehicle since the transmission in their own car went out. Currently, they live rent-free and split household bills in an aging single-wide trailer owned by a family member. Now that Champion is employed again, they’re saving for a deposit on a place of their own once they can get approved for public housing assistance.
Dault said the community had been generous in making sure they had plenty of clothing, furniture and gear since Madison was born.
“People have been really nice trying to give us stuff,” Dault said. “We just have nowhere to put it.”
Dault said they don’t need much for the baby outside of size two diapers, and would really like to get some new clothes for Madison’s five-year-old big sister, Kristina.
Kristina said she helps take care of her baby sister by playing with her, making sure she has a pacifier and throwing out dirty diapers for her mom.
In spite of all she’s been through, Madison is a content and smiley baby.
“She loves her feet,” Kristina said, as her baby sister chewed on her own toes.
Dault said they’ve been overwhelmed by the support from family and friends in the form of donated baby items and funding they continue to need from a GoFundMe account set up by a friend. Dault has faith that her daughter will get better and her family will eventually land back on their own feet.
“I can say that prayer goes a long way,” Dault said.
Want to help?
Friends set up a GoFundMe account to help the Champion family out financially as they work through 5-month-old Madison’s ongoing struggles with heart failure. Donations can be made at http://www.gofundme.com/izfjak