Yakira Amster's mother, Rebecca, describes her baby as a "fighter,” one whose middle name, Arielle, means “Lion of God” in Hebrew. She has needed that tenacity, as she has spent virtually all of her first seven months of life at Ann & Robert H. Lurie Children's Hospital of Chicago battling for her life. Yakira, who has Down syndrome, was born with a rare and complex heart defect, which has required two surgeries. She has also suffered two strokes, and takes more than 30 doses of medications a day.
“She’s been through more in her first seven months than 10 people will go through in a lifetime,” says Rebecca. “She’s really lived up to her name as a fighter.”
Yakira’s heart defects, which are common in children with Down syndrome, were diagnosed when she was still in utero, and Rebecca and her husband, Jeremy, were told that she would require surgery shortly after birth. The Amsters then decided to switch from the maternity hospital they used for the births of their other children to Northwestern Memorial Hospital’s Prentice Women’s Hospital
Prentice is connected by a bridge to Lurie Children’s and its Regenstein Cardiac Care Unit (CCU)
, allowing for immediate care for newborns who require urgent cardiac intervention, while keeping them close to their mothers as they recover from delivery. Cardiology
and cardiovascular-thoracic surgery
patients stay from admission to discharge in the hospital’s CCU, one of few pediatric units of its kind in the U.S., providing the expertise, technology and comprehensive resources to treat a broad range of complex heart conditions from infancy through young adulthood.
When Yakira was just one week old, she underwent surgery to repair a narrowing of the aortic arch in her heart, a condition known as coarctation of the aorta
. Eleven weeks later, she had atrioventricular canal
repair surgery to repair a hole in her heart. While in the hospital, Yakira also suffered two strokes, and she receives nutrition through a gastrojejunostomy feeding tube
Cardiologists and cardiovascular-thoracic surgeons at Lurie Children’s recently participated in a multi-center study that determined that patients with Yakira’s combination of heart defects have a higher survival rate and fewer unplanned reoperations when surgeons used a two-stage surgical approach (as they did with Yakira) instead of a repairing both conditions in a single procedure.
“We don’t know if she’s suffered any long-term damage as a result of the strokes, but both sides of Yakira’s body are moving symmetrically, and she is developing at a good pace considering everything she’s gone through,” says Rebecca.
As a patient in the Cardiac Care Unit , Yakira has been cared for by the same team of physicians and nurses since she was first admitted.
“Her caregivers make us feel like we’re part of the team,” says Jeremy. “We have a lot of questions, and not once have we been made to feel like we’re bothering them. They also take amazing care of us. I don’t know how many times a nurse or doctor has asked, ‘And how are you doing?’ We couldn’t have asked for a better experience.”
Rebecca and Jeremy are also grateful for the support of family and friends. They spend most of the day at Yakira’s bedside, and in the late afternoon are relieved for a few hours by either Rebecca or Jeremy’s parents so they can go home for a few hours to pick up their other four children (sons Avery, 11; Naftali, 9; and Adir, 5; and daughter Libbie, 3) from school, help them with homework and have a family dinner at their home on Chicago’s far north side. Then they return to Lurie Children’s for a couple of hours in the evening, staying until 10 p.m.
“For the first six weeks we spent each night in Yakira’s room,” says Rebecca. “But her nurses are so good that now we’re comfortable not staying the night at the hospital. We know she’s in good hands.”
More than anything, Rebecca and Jeremy would like to bring Yakira home for good. Most recently Yakira has been dealing with fluid imbalance issues, for which she takes several diuretic drugs. She’s also has been experiencing recurrent fevers, which her doctors have so far been unable to explain. Still, the Amsters remain hopeful she’ll be well enough to go home soon.
“We know Yakira will experience other challenges down the road,” says Rebecca. “But she’s come such a long way from where she was, and is like a completely different baby now. Yakira is an incredibly strong girl who continues to fight every day. She is lucky to be in a top-notch hospital with incredible nurses, therapists and doctors.”