Doctors performed brain surgery on a baby before she was born and now she's thriving

CNN

A team of Boston doctors successfully performed a novel surgery on a fetus to treat vein of Galen Malformation, a rare brain disorder.

This ultrasound-guided surgery was the first in utero procedure for this condition. In utero surgeries have been performed for other conditions. The journal Stroke published details of the procedure that took place in march.

This condition is caused by a blood vessel called the vein of Galen that does not develop properly. The malformation known as VOGM can cause an excessive amount of blood to stress the vein and heart, resulting in a cascade health problems.

CNN reported that Dr. Darren Orbach is a radiologist and expert on treating VOGM.

Infants are usually treated using tiny coils inserted through a catheter after birth to reduce blood flow. Orbach says that the treatment is often too late.

Despite advances in treatment, "50 to 60% of all babies who have this condition will become very ill immediately." Orbach stated that the mortality rate for these babies is about 40 percent. He said that about half of the infants who survive have severe cognitive and neurological issues.

Faced with a decision

Derek and Kenyatta of Baton Rouge in Louisiana were both surprised and delighted to learn of their fourth pregnancy. Kenyatta Coleman, 36, was married to Derek Coleman, 39, for seven years. They were excited to welcome their fourth child.

Kenyatta stated that nothing about her pregnancy seemed to be particularly noteworthy. Kenyatta, who had three children by then, thought that ultrasounds were routine appointments.

The baby was doing fine. The scan was unremarkable. Kenyatta told CNN exclusively that all of Kenyatta's biophysical profiles are unremarkable.

She said that the Colemans did even genetic testing to determine that Kenyatta was a low-risk pregnancy.

When Kenyatta had her ultrasound 30 weeks after giving birth, she noticed that something was different. She recalls her doctor telling her she was concerned.

Kenyatta recalls: 'She told me something was wrong with the baby's heart and brain.

A further investigation revealed VOGM.

The Colemans learned of a clinical study run by Brigham and Women's and Boston Children's Hospitals that would provide treatment even before the baby was born.

Kenyatta recalls that the Colemans were told of the risks, such as preterm labor or brain hemorrhage in the fetus. However, they felt there was nothing else to do. They wanted to take part in the trial.

Kenyatta had surgery on March 15, exactly a month after his ultrasound revealed the malformation.

Two patients are involved in a procedure

Kenyatta, the mother and her child were both present for this operation.

Doctors needed to ensure that the fetus' head was facing the abdominal wall of the mother. Dr. Louise Wilkins-Haug of Brigham and Women's Hospital's division director for Maternal Fetal Medicine and Reproductive Genetics, worked with Orbach to ensure that the fetus remained in the correct position during the procedure.

Wilkins-Haug said they borrowed a technique from previous in utero heart surgeries. Wilkins-Haug explained that once the fetus was in the ideal position, he would 'give it a small dose of medication to keep it from moving, and also a small dose of pain medication'.

The doctors then inserted an needle into the abdominal wall and carefully threaded a catheter to the needle so that the metal coils could fill the vein, reduce pressure, and slow down the blood flow.

Scans showed that the baby's blood pressure was dropping in certain areas.

Orbach said, "It was exhilarating to have achieved technical success in the embolization."

Success was not defined by the moment, but what followed.

Will she be able show continuous progress? Will she only need additional support once I get her? Will she still suffer from immediate heart failure? Kenyatta wondered.

Always a fighter

Kenyatta began to slowly leak amniotic liquid after the procedure. She went into labour two days later at 34 weeks.

Denver Coleman, weighing in at 4 pounds and one ounce, was born on March 17.

Kenyatta recalls, "I heard her cry the first time, and I just - I couldn't put into words what I felt in that moment."

It was the most beautiful thing to be able hold her, look up at her and hear her cry.

Her doctors were equally pleased. Wilkins-Haug said that she was stable during the newborn period and did not require any immediate treatment, such as coil placement or medications to support her heart function. We hope that she will not need to have any more coils implanted.

Derek recalls his first visit to Denver in the neonatal intensive-care unit. Doctors asked him if he would like to kiss her.

He said, "I kissed her and she just made little baby sounds and stuff." "That was everything I needed."

Denver is still doing well, and spends most of her day sleeping and eating. She is not on any medication for heart failure and her neurological examination is normal. No indications exist that she requires any further interventions.

Kenyatta stated that'she has shown us since the beginning she is a fighter'. She's also demonstrated... "Hey, I want to be here." '