Saving Oliver: Helping babies born with rare disorders

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Every eight seconds a baby is born in the U.S. That means almost 4 million little boys or girls will be born in 2020.

For most, the delivery will be textbook. But what if it isn't?

We met a little boy who came into this world with something quite unexpected, and things turned out better than anyone ever thought possible.

Oliver's dad vividly remembers his son's birth.

"I remember probably most vividly was the doctor saying to me, 'All right, dad, get your camera ready.' Pretty shortly thereafter, that's when sort of the air was taken out of the room. She said no," Peter Heilbron said.

Oliver was born with a large, soft cystic mass under his armpit.

"It was so large that his, his arm was completely elevated up over his head and it was stuck in that position," pediatric surgeon Dr. Dean Anselmo said.

The 12-ounce mass was a lymphatic malformation.

"When a lymphatic malformation develops, those, instead of those lymphatic channels developing as tiny little tubes, they develop like little bubbles or balloons," Anselmo said.

Anselmo is the co-director of the Vascular Anomalies Center at Children's Hospital Los Angeles, one of the few in the country that uses sclerotherapy for vascular malformations.

"I kind of describe it like if you put superglue inside a balloon and then try to fill it up with water," Anselmo explained. "It can't. It won't fill up."

Using a needle, doctors injected a special medication into the cyst that causes the wall to collapse. It took three consecutive treatments to reduce Oliver's malformation.

He was left with a surgical scar that's barely visible and full use of this right arm.

"So there are days where I look at him and I see his tiny little remnant of a scar and I'm like, I can't believe that this is that, that is not how he was born," Jennifer Heilbron said.

These types of malformations develop between four to six weeks of gestation and often cannot be seen during a prenatal ultrasound.

Twenty years ago, this story may have a different ending for Oliver. Surgeons would have immediately cut the cyst off, often leading to a recurrence of the malformation or causing problems that could last a lifetime.

Children's Hospital Los Angeles is one of 10 multidisciplinary vascular anomaly centers in the United States. Luckily, the Heilbrons live less than an hour away.

MEDICAL BREAKTHROUGHS
RESEARCH SUMMARY
TOPIC: SAVING OLIVER:HELPING BABIES BORN WITH RARE DISORDERS
REPORT: MB #4694

BACKGROUND: Vascular malformations are a type of birthmark or growth often present at birth. Composed of blood vessels, they can cause functional or cosmetic problems. Blood vessel abnormalities can involve arteries, veins, capillaries, lymphatics, or a combination of these blood vessels. Many of these malformations are apparent at birth, others do not show up until later during childhood and teenage years. The most common ones that impact children in the first year of life are hemangiomas, the majority of which will improve throughout childhood. (https://www.chop.edu/conditions-diseases/vascular-malformations)

LYMPHATIC MALFORMATIONS: Similar to veins, lymphatics carry water instead of blood and are part of the immune system. Lymphatic malformations affect only the lymph vessels and result in water-filled cysts that range in size from microscopic to macrocysts the size of small water balloons. Veins and lymphatics travel together and oftentimes blood can leak into the dilated lymphatics, which can result in blood blisters and blood crusts on the surface of the skin connecting to deeper lymphatics below. Some treatment options involve the carbon dioxide laser and a KTP laser, or a lifetime of compression stockings and pumps as surgical treatment tends to be suboptimal for lower extremities. (https://www.chop.edu/conditions-diseases/lymphatic-malformations)

SCLEROTHERAPY FOR VASCULAR MALFORMATIONS: Previous to this therapy technique, a majority of kids suffering from vascular malformations would go straight into surgery regardless of where the malformation was located. These surgeries often resulted in recurrence of the malformation, causing damage to vital structures, scarring, and resulting in a likelihood of complications. "Sclerotherapy is a procedure done by an interventional radiologist usually, and it's under an anesthetic. The cyst is aspirated, a small needle is put inside of it, and the fluid is taken out. Then a medication is put inside of it. Sometimes that's done with a small catheter but most of the time it's with a needle. That medication creates an inflammatory reaction and it causes the walls of that malformation to become sticky and collapse into itself. When that happens, it can't fill back up with the fluid. I kind of describe it like if you put super glue inside a balloon and then try to fill it up with water it can't, it won't fill up. So that's what sclerotherapy does and it's a relatively well-tolerated and safe procedure, although it creates inflammation in a large area, so it's painful. And there are potential side effects and risks to that, but it's a needle instead of a scalpel, right? So it's much less invasive." (Source: Dean Anselmo, MD, FACS, FAAP)