When their daughter, Kennedy, was diagnosed before birth with a blood vessel malformation in her brain known as an arteriovenous malformations or “AVM” during an ultrasound scan, Heather and Brian Danner were frantic to find an expert to treat her.
Doctors in their hometown of Davenport, Iowa, recommended they take her to hospitals in St. Louis or Philadelphia. Then a friend of Heather’s connected with a mom who urged the Danners to meet with Lurie Children’s interventional neuro-radiologist Dr. Ali Shaibani, who had treated her child for an AVM, and is the only pediatric specialist of his type in the Chicago area.
“Right from the start we absolutely loved Dr. Shaibani,” says Heather. “He was very down to earth with us and explained everything in ways that we could understand.”
AVMs are tangles of abnormal blood vessels that “short circuit” the normal circulatory process. Dr. Shaibani treats these vascular disorders using minimally invasive, image-guided navigation through the blood vessels using live X-rays to create a real-time “road map” of the blood vessels.
A tiny catheter is threaded into an artery and guided to the precise location of the patient’s malformation. Then an embolizing material made up of a medical version of superglue or polymer is injected through the catheter and directly into the malformation to block its blood flow and close it off. Often, patients need multiple embolization procedures to gradually close off the blood flow.
Dr. Shaibani explained that the Danner’s baby had a rare subtype of AVM located deep in the brain called a vein of Galen malformation. The capillaries that normally slow blood flow and permit oxygen exchange with the surrounding tissues were missing, causing blood to rush directly from Kennedy’s arteries into her veins. In more severe cases, a patient’s blood can flow directly to the heart and overwhelm it, causing congestive heart failure.
“Even though I work as a surgical technologist, this was all new to me,” says Heather. “I followed several websites about vein of Galen malformations, and learned that many children who have them develop health issues like seizures, hydrocephalus and learning and cognitive disabilities. It was a very stressful time for us.”
The Danners came to Chicago and stayed at the home of a friend for several weeks. A week before her due date, Heatherwas admitted to Prentice Women’s Hospital, where labor was induced. There was no time to wait, because the blood from Kennedy’s head was causing her heart to fail. Immediately after birth, Kennedy was rushed over a bridge connecting Prentice’s NICU to Lurie Children’s NICU.
Dr. Shaibani performed Kennedy’s first embolization procedure when she was only three days old. Heather says he told her that Kennedy had one of the biggest brain AVMs he had ever seen. During her month-long NICU stay, Kennedy had a total of four of the procedures before being finally going home to Iowa to join her big brother, Myles.
Over the next couple of years, the Danners became very familiar with the drive from Davenport to Lurie Children’s. When Kennedy was a little over a year old, she needed heart surgery for a pulmonary valve defect related to her AVM. Dr. Shaibani also performed a series of additional embolizations during her inpatient stay. Over the next couple of years Kennedy underwent regular check-ups with Dr. Shaibani, who will follow her until she’s 18.
According to her mom, Kennedy, who will turn 5 in April, is considered cured, and has no physical limitations.
“Kennedy was extremely fortunate to be under Dr. Shabani’s care and to come through this horrific experience and live a perfectly normal life,” says Heather. “Kennedy is very happy and very loving. Most importantly, she’s perfectly healthy, and has shown no signs of developmental delays. If you saw her today, you would never know she’s had any medical issues.”