A Mother Trusting Her Instincts
Tatianna knew something wasn't right when her daughter, Maleia, was just three days old. She was trying to feed Maleia, but she wouldn't drink. She seemed to have problems swallowing and was acting different than a typical newborn. Tatianna trusted her motherly instincts and took Maleia to the nearest hospital: St. Christopher's Hospital for Children.
At St. Christopher's, the doctors discovered Maleia had a low temperature and kept her overnight in case of an infection. The overnight visit turned into a 53-day journey in the NICU so the doctors could find answers. At first, all Maleia's tests came back with negative results. After four weeks, a genetic test revealed Maleia had Potocki-Lupski Syndrome (PTLS), a rare genetic disorder that involves developmental delays, difficulty swallowing, and weak muscle tone.
Managing Difficulties with PTLS
Multiple studies of Maleia's swallowing process showed that feeding her by mouth was unsafe, so she had to depend on a feeding tube. Maleia also underwent sleep studies that revealed sleep apnea and high blood pressure in the arteries that sent blood from her heart to her lungs. A few weeks later, after passing another swallow study, Maleia was able to come off the feeding tube, be released from the NICU, and return home. At home, Maleia must sleep with oxygen, but can spend time with her loving family and play with her big brother.
Maleia’s Journey Continues at Home
Tatianna is thrilled to be home after spending every moment in the NICU with Maleia. The family is extremely thankful to NICU nurses Joanie, Abigail, Angela, April, and Erin for their support and care for both Maleia and the rest of their family. These nurses cared for Maleia with compassion, and helped ensure that her parents were taking care of themselves, too. Tatianna said Nurse Joanie provided a lot of comfort to them during their stay at St. Christopher's.
The family is also grateful for the friendly staff all around St. Christopher's who made their stay feel personal. In addition, Tatianna thanked Deborah and Pam from social work for being support systems for the entire family. She’s grateful that the staff was always asking about Maleia and how she was doing. "They'd ask, 'How's the baby?' and I appreciate that. I was basically like a regular."
Today, baby Maleia is gaining weight, and after starting out below the average weight of 98 percent of infants, she’s now in the 25-to-50 percent range, a huge improvement. Maleia continues to receive care from her primary care physician at St. Christopher’s, Renee Turchi, MD. The family was excited to enjoy a summer vacation together and is grateful to be making new memories at home. For Tatianna, having both of her children at home is a blessing she never takes for granted.
Tatianna is thankful for the care her daughter received at St. Christopher’s and for the nurses, doctors, and staff who supported their family through one of the most difficult chapters in their lives. Looking back, Tatianna encourages other families to hold on to hope, sharing that even when things feel overwhelming, they will get better. Today, Maleia is at home with her family, and that is what means the most to Tatianna and reminds her of how far they have come.