Husband and wife, Bill and Michaela, dreamed of starting their own family, so they were thrilled to learn they were pregnant with their first child in April of 2016.
At the 20-week ultrasound, doctors struggled to get a clear picture of their child’s heart, so they planned to try again at an upcoming appointment. After a second failed attempt to capture an image a few weeks later, Michaela and Bill were sent to a perinatal clinic. At 24 weeks, their baby was diagnosed with Tetralogy of Fallot with pulmonary atresia and major aortopulmonary collateral arteries (TOF/PA/MAPCAs), a rare congenital heart defect.
While initially dismayed at the diagnosis, Michaela and Bill determined they needed to focus on the fact that their baby was growing, there were no signs of early labor and aside from its heart, everything looked healthy. They limited themselves to doing minimal research online, only reading what they needed to know. Though fearful of what was to come with the TOF diagnosis, Michaela recalls feeling at peace after they met with Dr. Moga for the first time. He explained the cardiovascular team’s expertise, walked them through the possible interventions after birth, and said to focus on the pregnancy and having their baby.
On January 5, 2017, Margaret Susan was born. Expected to require a lot of initial support, Margaret surprised doctors when she didn’t need oxygen and began nursing only a few days after birth. Margaret was moved from the neonatal intensive care unit (NICU) to the cardiovascular care center (CVCC) and at one-week-old, she had her first surgery to place a shunt in order to help promote the growth of her pulmonary arteries. While she surpassed expectations in her first week, Margaret suddenly began having arrhythmia episodes after the shunt procedure and doctors wondered if she was having a reaction to coming out of anesthesia. However, it was quickly determined that Margaret required a pacemaker, which was surgically placed inside her small body at three weeks old.
Thanks to loads of love from family and friends and dedication from her care team at Children’s, Margaret showed strong signs of improvement and was weaned off of her pain medications. She also had a G-tube inserted to help her receive the vitamins and nutrients she needed since she was unable to keep up with eating. On February 18, 2017, Margaret was discharged after spending the first 44 days of her life at Children’s.
Today, Margaret is five months old and doing exceptionally well. While she has an open heart surgery scheduled for this summer, Michaela says she’s a happy, sassy baby who knows what she wants. She even has her own fan base on social media that follows her progress via hashtag #MightyMargaret.
“She’s been our saving grace,” said Michaela. “She helped my husband and I ground ourselves. We’re now so much more appreciative and focused on living in the moment.”