Resplendent in a peach-colored tutu with shoes and hair ribbons to match, the 4-year-old child who was once given a less than 10 percent chance of survival in utero, returned to Cohen Children’s Medical Center with her proud parents to greet the team of doctors and surgeons from Cohen and Long Island Jewish (LIJ) Medical Center’s Katz Women’s Hospital who saved her life.
Clementine will join her parents, Kathleen and Mark, of Long Island, on Sunday, May 19, to take part in the Northwell Health Walk. The annual event serves as a fundraiser for Katz Institute for Women’s Health and Cohen Children’s Medical Center, the two institutions which, as proud papa Mark said, “worked so beautifully together to give my daughter life.”
Referred to as their “bright and shiny” miracle child by her parents, the lovely youngster is alive and thriving today because an ultrasound, originally intended to reveal their baby’s gender, detected a heart defect while in utero.
Like most parents, they went for an 18-week anatomical sonogram at Katz Women’s. Up until that point, routine tests indicated that the baby was perfectly healthy. The parents were eager for this particular test because they wanted to find out – is it a boy or a girl?
Natalie Meirowitz, MD, director of Maternal/Fetal Medicine, LIJ, recalled the day: “I remember how difficult it was to have to tell these loving parents that their baby was very sick. Our tests revealed the presence of Hydrops Fetalis, a condition in which fluid accumulates, probably as a result of a chromosomal defect such as Down syndrome. I needed to strike a balance between giving these parents hope while presenting them with the reality of the situation. We had to tell them that their baby had about a 10 percent chance of surviving through the weekend. The hydrops was advanced…there was no treatment.”
Four days later, an amniocentesis revealed that the baby was a girl. The test also revealed that the baby had an atrioventricular septal defect (very common with children with Down syndrome Trisomy 21, a condition with which their baby was eventually born). At the time of this testing, the baby’s heart was about the size of a quarter.
“A child born with this heart defect has a large hole in the wall that separates the left and right sides of the heart,” said Vincent Parnell, MD, Cohen Children’s surgeon-in-chief. “The hole is centrally located where the upper chambers (the atria) and the lower chambers (the ventricles) meet.”
The resulting diagnosis was grim. On the way home, the distraught parents decided to name their baby girl Clementine Grace (named for God’s loving mercy). “As soon as we saw her in these tests, we loved her,” said her mother. “We knew it would be a difficult road, but we were all together.”
Clinging to constant prayer, they decided to move forward. About two weeks later, another fetal sonogram revealed that the hydrops was almost completely gone.
“A spontaneous remission of this type was nothing short of a miracle,” said Denise Hayes, MD, the pediatric cardiologist who was already monitoring baby Clementine’s growth. “It was a joy to be able to tell the parents that because of this development, the baby’s heart could certainly be repaired after birth.”
At 38 weeks, Clementine was born on August 21, 2014, with cardiology teams on hand. Two months after her birth, Dr. Parnell operated on Clementine’s tiny heart, which, at the time, “was about the size of a ping-pong ball.”
After hugging her doctors, Clementine happily waved to the crowd of well-wishers and raced down the hall to play with her baby sister.