"Not compatible with life." That’s the phrase a maternal-fetal medicine specialist used when diagnosing Ashley and Chris Salvador’s unborn son with bilateral fetal multicystic dysplastic kidney disease after reviewing Ashley’s 20-week ultrasound. In other words, their baby, Easton, would die shortly after birth.
"We were devastated, and we spent the majority of our pregnancy preparing for the absolute worst," says Ashley.
They were referred to The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital of Chicago.The institute provides comprehensive innovative fetal and maternal care for women with high-risk pregnancies. The Chicago Institute is a multi-disciplinary team, drawing on extensive expertise of faculty from maternal-fetal medicine, neonatology, fetal surgery and more than 20 other adult and pediatric medical and surgical specialties.
When Ashley and Chris met with one of the team members, Earl Cheng, MD, Head of the Lurie Children’s Division of Urology and the Founders’ Board Chair in Urology, he told them that it’s not possible to make a definitive diagnosis of the bilateral form of the disease based on ultrasound scans. Dr. Cheng also said that the fact that Ashley’s amniotic fluid was normal was a positive sign.
"After meeting with these specialists, we felt like there was a glimmer of hope," says Ashley. "We were excited about being pregnant for the first time in a while."
Easton had other conditions often seen in patients with his form of kidney disease, including an anorectal malformation and tethered spinal cord syndrome, which results in pulling or stretching of the spinal cord. All would require surgical correction and coordination of care by the various specialists.
"We were able to give Ashley and Chris a timeline for addressing each problem," says pediatric surgeon Erin Rowell, MD. "We reassured them that our surgical and NICU teams have the experience to help their baby through each stage with the best possible outcomes."
An hour after birth, Easton was transported to Lurie Children’s Neonatal Intensive Care Unit (NICU), where a team of physicians and nurses was waiting for him. Despite his multiple issues, Easton’s parents were overjoyed to learn that instead of the bilateral form of the disease, Easton had only one affected kidney. Eventually, his functioning left kidney would compensate for the nonfunctioning one. Not only would he survive, Easton would grow up with virtually no physical limitations, able to do everything other kids can do.
Now six months old, Easton has undergone a series of surgical procedures by Dr. Rowell, including a temporary colostomy before surgery to correct an anorectal malformation. Dr. Cheng has performed urinary reflux surgery to repair a defect that caused urine to back up into Easton’s functioning kidney. He will also undergo a procedure with surgeon Robin Bowman, MD, Director of Lurie Children’s Spina Bifida Center, to correct his spinal cord malformation. Finally, his colostomy will be closed after he has healed from spine surgery.
"With every one of Easton’s doctors and nurses, we’ve felt like we were equal partners in his care," says Ashley. "His various specialists really work as a team, and we know he’s in the best of hands.” To show their appreciation for the care Easton has received, the Salvadors recently participated in the Move for the Kids 5K Walk/Run for Lurie Children’s. Their 60-member "Team ECS" raised more than $11,000.
While Easton continues to face challenges, his prognosis for a normal life is excellent, and he will be closely followed by pediatric kidney disease specialist Margret Bock, MD.
"He’s such a happy baby, and is so resilient," says Ashley. "Although some days are more of a challenge than others, whatever we have to deal with is like a walk in the park, because we originally didn’t think Easton was going to survive. When we see him smiling and happy, we realize that to be able to spend each day with him is a gift."