Avoiding a Liver Transplant: Noa’s Story

When small masses of tangled blood vessels (hemangiomas) began to appear on their baby daughter’s skin and then were found on her liver, the Oelsners feared the worst. A referral to a renowned pediatric liver specialist at Mount Sinai led to a successful treatment that did not involve surgery.

Noa Oelsner was born on August 31, 2011 by C-section weighing 9 pounds 12 ounces. Her parents Amalia and Dan could not have been more delighted with their beautiful, bouncing baby girl.

Then, within less than a week of Noa’s birth, red spots began to appear on her body. Noa’s pediatrician examined them but was unconcerned. The red spots continued to appear and after a few more visits to the pediatrician, Amalia and Dan decided to take Noa to a dermatologist to have the spots checked. The dermatologist immediately wanted to perform a biopsy. Noa’s father was not ready for that, and at a Friday Shabbat dinner, a friend, who is also a pediatrician, at Mount Sinai recommended calmly but firmly that they take Noa on Monday to a doctor she knew. She said she would arrange the appointment herself.

Still unalarmed, Noa’s parents followed their friend’s advice and met with the doctor. The doctor ordered an ultrasound test and during the test, the technician’s face said it all. Afterward, a parade of doctors filed in to confer with Amalia and Dan. The bad news was that there was a tumor on Noa’s liver, but the good news was that it was a hemangioma (a noncancerous tumor) and it was treatable. The Oelsners were then referred to Dr. Ronen Arnon, Medical Director of the Pediatric Liver Disease and Liver Transplantation Program at Mount Sinai, who they were told had successfully treated a similar case a year earlier.

Coming to Mount Sinai

When the Oelsners met with Dr. Arnon, he began by reviewing the results of Noa’s ultrasound. He then ordered an MRI (magnetic resonance imaging) test, a painless, non-invasive test, on Noa to gather more information about the tumor. The MRI revealed not one but multiple vascular tumors on Noa’s liver. Dr. Arnon explained to Amalia and Dan that there was a treatment available for their daughter’s condition – a treatment with almost no side effects -- discovered by doctors in France that used the medication propranolol (Inderal®), a drug normally prescribed for high blood pressure. The French doctors had stumbled upon the possible efficacy of propanolol for treating conditions such as Noa’s when they gave a patient with high blood pressure, who coincidentally had hemangiomas, the drug. The patient took the blood pressure medication and the hemangiomas disappeared.

Dr. Arnon and his team at Mount Sinia followed suit by successfully treating another baby with the same type of tumor as Noa’s with propranolol.Their experience, one of the first 10 published cases in the world, was documented in the Journal of Pediatric Gastroenterology in 2012.

Dr. Arnon recommended a similar course of treatment for Noa in the hope of helping her and avoiding a liver transplant later on. Children like Noa, and others with similar conditions, sometimes need liver transplantation as the vascular tumor grows and compresses other organs, he explained. The only treatment option prior to propranolol was high- dose steroids which have many side effects; furthermore, response to this treatment is generally not so good, Dr. Arnon said. The Recanati/Miller Institute was one of the first centers in the world to start using propranolol to treat pediatric liver hemangiomas and to publish its experience with the new therapy in the medical literature.

Moving Forward with Hope

Coping with their infant daughter’s illness and having to make decisions about what was best for her was extremely difficult for the family. But Dr. Arnon’s confidence and his willingness to answer every question, no matter how complicated or minute in detail, helped them move forward with hope, the Oelsners said.

And move forward they did. Noa will soon celebrate her first birthday. She is a beautiful, precocious child. As the hemangiomas on her body have shrunk more than 50 percent and the tumors on her liver have almost completely disappeared, the family is forever grateful to Mount Sinai and to Dr. Arnon and a treatment that has made all the difference for their little girl.