This is a printer-friendly version of an article from Zip06.com.
08/19/2020 08:30 AMWhen lifelong East Haven resident Norleen Ponte and her husband, Norbert, were expecting their first child, they started a college fund. At 17 weeks in utero, though, their daughter Madi was diagnosed with a number of medical complications and she was not expected to live through the pregnancy.
Despite Madi’s diagnosed complications, which included a disconnected esophagus and stomach, Pierre Robin syndrome, and a heart defect, her parents would not give up on her. Doctors didn’t expect Madi to live to term and encouraged Norleen to terminate her pregnancy.
Madi did make it through the pregnancy, though, and touched many lives before she passed away two days before her fourth birthday.
“Every time I went in throughout my pregnancy, they asked me the same question and I kept saying ‘No’ and that if she’s meant to be, she’ll be,” says Norleen, who carried Madi to term, giving birth via a c-section on Feb. 7, 2003. “When she came, I was like, ‘I told you.’ She wasn’t supposed to make it the first 24 hours and we had her baptized right there.”
Shortly after having her c-section, Norleen got out of bed and walked herself to the nursery to see her daughter in the NICU, a place the pair would spend much of their time for the next 6 ½ months.
Norleen is thankful to Madi’s specialists, who included Dr. David Karas, Dr. Sandra Escelera, Dr. Milissa McKee, Dr. Joseph Shin, Dr. John Fahey, and Branford/North Branford Pediatric Group, as well as the many nurses with whom she interacted throughout the time in the hospital and the next several years.
“We had such a great group of doctors and surgeons and the crew at Yale was amazing,” says Norleen “They all worked together to do what was best for Madi.”
When Madi was one week old, Norleen was again in the NICU, sitting by her crib, talking to her, playing music, and reading to her. One of the doctors approached Norleen and asked if she had been able to hold her baby yet.
“He got everything I needed and arranged all of the wires and tubes and I just sat there and didn’t move for hours,” says Norleen. “My husband had brought sushi to the hospital for dinner and now every year on Valentine’s Day we have sushi to remember the good things and talk about the first time we were able to hold her.”
In addition to remembering the first time they were able to hold their baby, the family, which now includes 14-year-old Mia and Matteum, who will be 12 in September, celebrates Madi’s birthday with a cake every year. Norbert is a chef and had always baked the cake with Mia’s help, but this year, Mia took on the task on her own.
After spending 2 ½ months in the NICU, Madi then spent the next four months in the Respiratory Care Unit. Norleen spent much of her time at the hospital, learning about the different procedures and necessary steps for taking care of her daughter.
Throughout the long months in the hospital and following Madi’s homecoming, Norleen noted that their extended family was a “huge support system” that remained by their sides through every operation, decision, and procedure.
“I don’t think we would’ve gotten through it without our family,” says Norleen. “They were always there, doing whatever they can and just wanted us to know they were there whatever we needed. It meant the world.”
At 6 ½ months old, Madi came home, though she still needed home care from nurses. Throughout their time at the hospital, Norleen and Madi had formed relationships with many of the nurses and several offered to help with Madi’s home care.
“They were with us day and night, through holidays and they became like family,” says Norleen. Madi communicated through sign language “and she really brought people together. When she passed, we talked about what to do with the money we had saved for her college fund and they suggested starting a foundation.”
Supporting Other Families
Though Norleen wasn’t sure how to begin a foundation, the idea took root. Her family and the nurses began to think about what Madi would want to support and a board was formed that included family members, several of Madi’s nurses, and some family friends.
“We wanted to help other families the way we were helped with Madi,” says Norleen. “The hospital was my home during that time and you don’t realize all the extra expenses you incur—parking, food. When we were in the hospital, friends of ours had given us a parking pass for a month—that was probably the best gift anybody ever gave us. It just took one more stress off of us.”
The Madi Ponte Foundation continues to support families with children in the hospital in a number of ways. It not only supplies parking passes to families, but helps with other expenses such as lodging, food, and childcare. During the holidays, the foundation distributes gift baskets to families that includes gift cards, snacks, and other treats.
In addition to supporting programs at the hospital, the Madi Ponte Foundation has also helped fund hippotherapy for children in need. After being told that Madi would never walk, someone had recommended hippotherapy, form of physical, occupational, and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input.
Norleen brought Madi to Movado Farms in Durham where Madi worked with therapist Tammy Scotto and a horse named Frisco. After six months of hippotherapy, Madi was able to walk.
“Madi liked the horse but didn’t like the work and the first day we went, she hated it,” says Norleen. “Tammy said, ‘She will walk. I promise you.’ Six long months later, she did end up walking. It was like a miracle.”
In order to continue to support the foundation, Norleen, her family, and the board have an annual Halloween party fundraiser, though this year, the event will not happen due to COVID. The event is usually held at St. Pio Church’s hall and includes a pasta dinner, homemade by Norbert.
In addition to food, there are raffles and a DJ. Norleen always enjoys seeing the children enjoying the event as well as reminiscing with people about Madi. She is thankful for the support of her board, her family, DJ Ron Glick, Tyco Printing, and Capotorto’s, which donates stuffed breads.
“We usually go through pounds and pounds of candy and the kids get dressed up and have a great time,” says Norleen. “We usually get a great crowd, but with COVID, we would never want to risk anyone getting sick. My board is just the best—they’re wonderful. I know everybody is trying to put their heads together to think of different ways to adjust.”
COVID has also shifted life in the Ponte household. With Mia and Matteum home since March, the family has enjoyed spending more time together. Since Madi’s birth, Norleen has worked part-time for the State of Connecticut and after she finishes her morning of work, they spend afternoons together. The family has filled the time with projects around the house, puzzles, movies, board games, and going through photos.
Norleen has also volunteered her time with Sal Tinari Biddy Basketball. She has coached Mia’s team since Mia was in 5th grade and she coached Matteum’s team for six years.
“I try to do what I can for my kids, who are both wonderful, good-hearted children,” says Norleen. “All of my time goes to them. I even run in the morning at 4 a.m. so I don’t take time from their schedules.”
Norleen, Norbert, and their children also talk about Madi often as “she’s a big part of our lives and always will be.
“Don’t ever take your children for granted and always tell them you love them. They’re precious gifts, and you never know if you have another day to say it,” adds Norleen. “I always said I don’t have any regrets. Madi always knew how much she was loved. She always knew I was right there.”
While losing Madi was heartbreaking, Norleen appreciated all the support she found throughout her pregnancy, their time in the hospital, throughout Madi’s life, and through her work with the foundation. She is thankful for the staff at Yale, her family and friends, her board, and her husband, noting that Madi made them stronger.
“I knew from day one she was special and I was definitely given a gift and she was perfect in my eyes,” says Norleen. “She has made a huge impact on many people and when we are able to help people, we know it’s her helping and watching over all of us.”
For information, visit www.madipontefoundation.org. Donations can be mailed to the Madi Ponte Foundation, 32 Jardin Dr., East Haven, CT 06513.