Everyone was so good. They treated Heaven like a princess, and I felt free. I felt like I didn’t have to stay by her side all the time.
When Kerry Ann was 5 months pregnant, the doctors discovered the baby had a rare heart defect, Hypoplastic Syndrome. The left side of her baby’s heart couldn’t pump blood well; instead, the right side had to pump blood to the lungs and the rest of the body. Kerry Ann stayed strong and carried her daughter, Heaven, to term. After Heaven was born, she underwent multiple surgeries and had a shunt put in her heart to help the blood flow from the right to the left. Hypoplastic Syndrome also impacted Heaven’s lungs. Kerry Ann, stated, “She doesn’t have a left lung, and her right lung did not work properly. She would turn blue all the time.”
Even with her diagnosis, Heaven was able to be a lively child who danced, sang and did gymnastics. It wasn’t until Heaven was 12 years old when she needed a heart transplant. In January of 2023, she was placed on the heart transplant list. “On June 22, 2023, at 5:15 pm, we received a call, and we went straight to the hospital for the transplant. The next morning, around 11 am, Heaven went into surgery for about 12 hours,” explained Kerry Ann. “She came out of surgery, and there were complications. The doctors didn’t think she was going to make it. Heaven was intubated and having seizures, so the doctors asked me if I wanted them to remove part of her skull to alleviate symptoms and to help her survive. But she would likely go into a vegetative state.” Kerry Ann always advocated for her daughter. She reflected on the past 12 years and said, “I didn’t terminate my pregnancy at 5 months. Why would I wait 12 years? She is still my child. I’m going to take care of her and love her.” So, she signed the paperwork to have part of Heaven’s skull removed.
“The only thing I had to help me was my faith. I knew she was going to be okay.” Heaven was still intubated after her skull was removed. On July 7, she was extubated for 10 minutes, but she was unable to breath on her own. “The doctors rushed to re-intubate her and kept telling me that she would need a trach. I pushed back and continued to advocate for my daughter,” stated Kerry Ann. On July 27, they extubated her for a second time and monitored her closely. She has been able to breathe on her own ever since.
Rehabilitation at Children’s Specialized Hospital
“I wanted Heaven to get rehabilitation right away, but I was scared. It was going to be a new place, and I didn’t know how it would be,” noted Kerry Ann. “The doctors called a few rehabilitation centers, but I watched a video on Children’s Specialized Hospital (CSH) and knew we needed to go there.” Before starting at CSH, Kerry Ann continuously strived to help her daughter. “She wasn’t getting enough therapy yet, so I was doing speech with her and trying to feed her food and juice. Everyone was shocked when Heaven spoke and said the word “juice.” I used to starve myself because if she was not eating, why should I eat in front of her. I didn’t leave her side because I didn’t trust anyone with her care.”
When Heaven arrived at CSH’s Inpatient Center in New Brunswick, New Jersey, in August 2023, she barely spoke or ate. So, she started intense occupational, speech, and physical therapy. She also got to enjoy recreational therapy. “Everyone was so good. They treated Heaven like a princess, and I felt free. I felt like I didn’t have to stay by her side all the time,” exclaimed Kerry Ann.
Heaven loved going to her recreational therapy sessions! One of her Recreational Therapists, Christina Moran, stated, “During our recreational therapy sessions, Heaven worked towards her goals while having fun participating in her favorite leisure activities. She sang along to her favorite Taylor Swift and Beyoncé songs, made beaded bracelets for her nurses and therapists using an adaptive device, and created fashion dolls. Even when met with a challenge, Heaven always had a smile on her face and was ready to laugh.”
When Heaven started speech therapy, she experienced frustrations because she could not verbalize the words. One of Heaven’s speech therapists, Erica Bissonnette, noted, “Heaven came very determined for recovery. Her biggest barrier from a speech standpoint was her aphasia. This means she could understand spoken language better than express herself using words; she often relied on her eye contact and gestures. She loved to sing, and it seemed like she knew all the lyrics to every song, so therapy incorporated a lot of song and rhythm to aid in her ability to use her words to express herself.”
“Heaven used to get angry all the time because she couldn’t verbalize the words. Nothing was coming out. She cried all the time. I’m so happy this was an obstacle she overcame,” highlighted Kerry Ann.
Erica added, “By the time she went home, she was able to understand the majority of the simple language spoken to her and was making improvements in using more single words to express herself. She was an absolute pleasure to work with. Heaven and her mom were always smiling and motivated toward her recovery. I am so excited for all Heaven’s progress in the future and hope to see her “Ice Ice Baby” music video!”
Kerry Ann said, “One of her nurses, Gianna Micalizzi, told me “this place works miracles,” and wow, was she right.”
Gianna highlighted her experience working with Heaven by stating, “I have had the pleasure of being one of Heaven’s nurses since the beginning of her CSH journey to proudly being the nurse to discharge her home safely. Heaven’s progress is truly remarkable - from communicating through body language to speaking full sentences, she always kept staff laughing with her humor. I learned Heaven’s care early on and throughout her stay, which gave her and her mom the continuity of care necessary. I was able to advocate for her medical needs at a time she couldn’t yet express for herself.”
Kerry Ann highlighted, “From her nurses to therapists, Heaven received the best care. Not only did they help her get to where she is now, but they also gave me hope and motivated me.”
Never Giving Up
Heaven was discharged from CSH’s inpatient facility in November of 2023. Kerry Ann highlighted, “Heaven can talk more, stand, take a few steps, and hold her water bottle. She even helps me put on her clothes!”
Gianna added, “Heaven’s resilience inspires me and many. She pushed through any challenge thrown her way while maintaining a positive attitude. It was such a rewarding experience to watch her grow stronger each day and see her sweet and funny personality shine through more and more. I always reminded her, “Heaven, you’re a champ!” and she always will be.”
Before Heaven’s surgery, she danced. She loved TikTok dances, and she wanted to be a gymnast. “In gymnastics, Heaven was doing handstands and back flips. My greatest hope for her is to walk and dance again. Her speech is coming along, but the walking and the stuff she did before everything happened still needs to progress,” stated Kerry Ann.
When asked what Heaven likes to do for fun, Heaven eagerly said, “Singing.” “She loves to sing, go in the pool, dance in her chair, and listen to Taylor Swift,” highlighted Kerry Ann.
Heaven is continuing outpatient occupational and physical therapy at a local center in Manhattan to help her achieve her goals of walking and dancing again.
For parents and caregivers in similar situations, Kerry Ann encourages you to never give up or lose hope. “Just try to be there as much as possible for your child. Go to therapy and see what they’re doing. Help the nurses and Patient Care Technicians. If you can make the bed, make the bed. Because when you go home, no one will do that for you. When you go home, you’re the caregiver and shouldn’t be afraid to provide your child with care. You should also be your child’s biggest advocate,” stated Kerry Ann.
Kerry Ann wanted to thank the entire CSH team for never giving up. “A special thank you to our occupational therapists (Jocelyn and Emily), nurses (Alex, Kate, Sara, Millicent, Gianna, Sanjana, Shamona, Paulina, Meghan, Kaitlyn, Tim, and Lauren), PCTs (Walter, McKenzie, Diana, and Carol), recreational therapists (Isabella and Christina), speech therapists (Alexandria, Erica and Shannon), family faculty members (Luciana, Lizandra and Angelica), and environmental services team (Anthony). And anyone I might have forgotten. I don’t know anyone who is not good here.”
For more information, visit Children's Specialized Hospital.