In a groundbreaking medical achievement, a team of doctors in Boston has successfully performed a novel fetal surgery to treat a rare brain condition known as vein of Galen malformation. This innovative procedure, guided by ultrasound, marks one of the first of its kind for this particular condition and offers hope for affected babies. The details of the surgery, which took place in March, were recently published in the journal Stroke.
Vein of Galen malformation (VOGM) occurs when the blood vessel responsible for carrying blood from the brain to the heart, known as the vein of Galen, fails to develop correctly. This malformation leads to an excessive amount of blood putting strain on the vein and heart, resulting in a range of health problems. The two major challenges associated with VOGM are severe brain injuries and immediate heart failure after birth, according to Dr. Darren Orbach, a radiologist at Boston Children's Hospital and an expert in treating VOGM.
Traditionally, infants with VOGM are treated after birth using a catheter to insert tiny coils that slow down blood flow. However, this treatment often occurs too late, with a significant number of babies experiencing severe health complications and even mortality. Approximately 50 to 60 percent of infants with VOGM become seriously ill immediately, and the condition has a mortality rate of around 40 percent. Surviving infants often face severe neurological and cognitive issues.
Derek and Kenyatta Coleman of Baton Rouge, Louisiana, faced this challenging diagnosis during their fourth pregnancy. After routine ultrasounds, they discovered that their baby had VOGM, and their excitement turned to concern. However, they learned about a clinical trial conducted by Brigham and Women's and Boston Children's hospitals that offered the possibility of treatment before the baby's birth.
Despite the potential risks involved, including preterm labor and brain hemorrhage for the fetus, the Colemans chose to join the trial as they believed it was their best option. On March 15, just one month after the ultrasound that revealed the malformation, Kenyatta underwent surgery.
The unique aspect of this surgery was that it involved two patients—the mother, Kenyatta, and her unborn baby. The doctors had to ensure that the fetus was positioned correctly, with its head facing the mother's abdominal wall. Dr. Louise Wilkins-Haug, division director of Maternal Fetal Medicine and Reproductive Genetics at Brigham and Women's Hospital, collaborated with Dr. Orbach to ensure the fetus remained in the optimal position throughout the procedure.
To achieve this, the doctors utilized a technique borrowed from previous in utero cardiac surgeries. Once the fetus was in the right position, it received a small injection of medication to prevent movement and alleviate pain. Subsequently, the doctors inserted a needle through the abdominal wall and carefully threaded a catheter through it. Tiny metal coils were then inserted into the vein, reducing blood flow and alleviating pressure. Immediately after the procedure, the baby showed signs of improvement, with scans indicating decreased blood pressure in critical areas.
The success of the embolization procedure was exhilarating for Dr. Orbach, but the true measure of success lay in what followed. Kenyatta wondered if her baby would continue to make progress, if additional support would be required after birth, and if immediate heart failure was still a concern.
After the surgery, Kenyatta experienced a slow leakage of amniotic fluid and went into labor two days later, at 34 weeks. On March 17, Denver Coleman was born, weighing 4 pounds and 1 ounce. The sound of Denver's first cry brought indescribable joy to her parents.
Denver's doctors were also pleased with her stability in the immediate newborn period. She did not require any immediate treatments typically associated with VOGM, such as coil placement or medications to support heart function. The hope is that Denver will not require any further coil placements. Now, nearly two months after her birth, Denver continues to thrive, exhibiting normal neurological function and not requiring any medications for heart failure. The Colemans are amazed by their daughter's resilience and fighting spirit, grateful for the successful surgery and the chance to see Denver grow and thrive.
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