The Incredible Shunt Alternative for Hydrocephalus

I still remember sitting in the hallway of A.I. duPont Hospital for Children and hearing that CRY. It was one of the most beautiful sounds I'd ever heard. It came from around the corner and before I could even see her, I knew it came from our six month old baby girl. It was the sound that reassured me Adria would be okay after having just undergone head and brain surgery.

Six month old baby Adria that Monday morning before her surgery.

That morning was exactly six years ago today, but I still get emotional thinking about my husband and I sitting in the parent waiting room for a couple hours while our precious little Adria become only the eighth child in the U.S. to have a unique and revolutionary procedure done to treat her Hydrocephalus.  This build up of fluid in the ventricles of the brain is very common in children/babies with spina bifida (Adria has L4-5 myelomeningocele), but the typical treatment is a VP Shunt, which is a tube inserted into the brain to allow the excess spinal fluid to drain down into the abdomen. While this helps the issue, most children (and adults) with a shunt will have complications and malfunctions over time that can require multiple surgeries to correct.

This image shows what a Shunt looks like in babies. Many with spina bifida need this,
but Adria never did because of the ground-breaking procedure her pediatric neurologist performed on her.

Instead of having a shunt to treat her hydrocephalus, Adria's neurologist recommended a procedure called Endoscopic Third Ventriculostomy with Choroid Plexus Cauterization (ETV/CPC). Yeah...try to remember that name, let alone explain to someone what it means... But the fact is, this procedure successfully treated Adria's hydrocephalus and six years later, she has experienced NO COMPLICATIONS from it or every required another surgery!!! This is truly incredible. The only evidence that she even had an operation is a small scar buried in the hair atop her head.

Adria's Recovery

Soon after we heard the familiar cry in the hallway six years ago, we saw our sweet baby and held her in the Recovery Room. It was a large room full of young patients just coming out of surgery with just curtains separating us. Unfortunately, Adria's cries would not stop because she was so hungry. In preparation for the surgery, she had not eaten since the night before and the IV nourishment just didn't cut it for her.

The nurses were concerned about her throwing up if I fed her a bottle. But I started to be in extreme pain too...any mother who has nursed her baby and heard the cries of a hungry baby knows what I mean. Before too long, a nurse heard me complain about it and asked, "Oh, do you still breast feed her?" I told her Yes, and the nurse said, "Well then she can eat! She should be fine to nurse, breast milk is okay for her tummy." Praise the Lord! At that moment, I was more thankful than ever that I could nurse Adria. Within minutes, we were all Much Happier!

As Adria recovered from surgery, she did experience a lot of swelling on her head and looked so different. But Daddy held her in his arms for hours at a time and she recovered well and was transferred from the PICU (pediatric intensive care unit) to a regular patient room late that night.

Adria in the PICU after surgery with swelling on her head and paddles on her hands to hold the IVs in place.
Good thing she had her Soothie pacifier to provide extra comfort!

Daddy giving his baby girl some healing love.

Adria recovering in her patient bed that looked like a giant cage.

Within a few days, we were headed back home with a happy little girl who just had a little bald spot of her head where the surgeon had performed the operation.

The Man Behind the Surgery

Occasionally in life we find ourselves blessed and touched by an individual simply because we were IN THE RIGHT PLACE AT THE RIGHT TIME.

Now I don't necessarily believe this is coincidence; it's more like divine appointment. And for our family, this happened at a most critical time in our lives.

We met Dr. Benjamin Warf when I was five months pregnant with Adria. In the weeks following the ultrasound that first revealed our baby girl had spina bifida, we found ourselves sitting in front of many different doctors and specialists...desperate to learn and understand more about this unique life I carried.

Dr. Warf sat there with us in a tiny room at A.I. duPont Hospital for Children in Wilmington, Del. His kind and humble demeanor immediately put us at ease, even as our minds buzzed with the information he provided. We did not realize it then, but I know this to be true now, he is one of the BEST PEDIATRIC NEUROSURGEONS in the World! This is no exaggeration.

He is the father of six children and actually pioneered the ETV/CPC procedure to treat hydrocephalus while serving as a missionary doctor in Africa for six years. He realized the need to treat this condition without a shunt, particularly in a developing country where a shunt malfunction can quickly become life-threatening. He had fairly recently returned to share this procedure in the U.S. when we first met him.

Warf remained at A.I. duPont Hospital only a short time, but he was there to operate on our daughter's spina bifida closure surgery at birth and this surgery six months later. That following summer he moved on to Boston to further develop and teach this new procedure to medical students at Harvard and work at Boston Children's Hospital. Before he left Delaware, he did teach the ETV/CPC to another neurologists who is still at A.I. duPont Hospital performing this life changing surgery on children.

Even today, six years later, this procedure is still NOT widely known or used in the medical and Spina Bifida communities. I am a HUGE supporter of it and highly recommend any parent research whether this is an option for their child!

Since it's very difficult to explain what this surgery exactly is, I'll let Dr. Warf do the talking.

I just found this great video where Dr. Warf explains Hydrocephalus, a shunt and the benefits of the ETV/CPC procedure! Take a look: