Born April 24th, 2006
Our daughter Katie rushed in to the world six weeks early on September 17, 2004. She weighed over 6 pounds and aside from a heart murmur detected in the hospital, she appeared perfectly healthy. After a brief stay in the NICU she joined her big brother at home and we settled in for what we thought would be the typical newborn relay race with sleepless nights and countless dirty diapers. Almost immediately I noticed what was to be the tell-all sign that our daughter was not a typical newborn, a nickel-sized vein in the middle of her forehead.
Mothers spend hours looking at their baby’s faces and I was no exception. Day after day I watched her plump cheeks, dark hair and teeny nose. I also watched the vein on her forehead as it slowly stretched out, mapped across her forehead and under her eyes. Meanwhile, routine trips to her cardiologist were growing increasingly worrisome as he announced her heart was slightly enlarged and not functioning as he would prefer.
Every three months we visited our family doctor/pediatrician for routine checkups. On each of these visits I would mention the ever-increasing veins on Katie’s face and was told on more than one occasion, “her head is big, her skin is thin, they will disappear.” They did not. Instead, the veins, particularly on the right side, became so noticeable that strangers started began to stare and make comments. During Katie’s one-year checkup, our doctor finally took me seriously. Upon my insistence he ordered a CT scan. He thought perhaps the plates in her skull were closing prematurely but after the CT scan and subsequent MRI we received the diagnosis that no one was prepared for, hydrocephalus and Vein of Galen Malformation.
Early on we let geography be our guide in determining where we would go to have our daughter treated. Although his name was not one mentioned by our neurologist, we found a neurosurgeon familiar with VOGM in a state near us. Although he readily admitted he had seen few cases in his practice he agreed to treat Katie. His recommendation was to wait until she was older before proceeding with the first embolization procedure. We were sent back home with VOGM still looming over our heads. As the months went by we kept in touch with the neurosurgeon by phone and sent MRIs to him so he could monitor Katie’s progress from afar. Each time he said we should continue to wait for treatment. Frustrated by his lack of a concrete plan we contacted another neurosurgeon in the immediate area and planned to visit for a second opinion.
The day before our visit to the second neurosurgeon Katie developed a partial paralysis. Her neck was stiff and cocked to the right. Her right upper extremity was rigid. We drove for 3 hours to see the second neurosurgeon and then waited another 3 hours in his busy overflowing waiting room. When he finally saw us he announced swiftly and without much consideration that he believed her hydrocephalus had increased, causing her paralysis. He said we should immediately have a shunt put in to drain the excess fluid and then proceed with an embolization procedure. On our drive home we felt confused and exhausted. We now had one surgeon who wanted to continue to wait for treatment and another who, in our opinion, wanted to take a much more aggressive and drastic approach.
Within 48 hours her paralysis had subsided on its own and a CT done by our local doctor confirmed that the hydrocephalus, although still there, was no longer an immediate issue. Relieved by her improved condition, but knowing she was still a very sick little girl I turned to the Internet for help. I had seen the VeinOfGalen/U.K. website early on and knew that parents often responded to the forum when others asked for help. I posted a long rambling message about Katie’s diagnoses, her current condition and pleaded for someone to give us information we could use to save our daughter’s life. Within hours, quite literally, our prayers were answered.
A kind man named Bill Isaacs replied to my message via the email address I’d given on the site. Bill and his wife Elizabeth, whose son Liam had also been diagnosed with VOGM, gave me very detailed information about what their opinion of our situation was and the doctors they recommended we contact. Though we only communicated via email at first and then by phone, I felt a comfort with them I hadn’t felt with any of the doctors, neurologists or neurosurgeons we had seen. Later when I learned their son passed away as a result of VOGM when he was just a few months old, I was struck again by their amazing selfless spirit. The Isaacs provided the names of two neurosurgeons/neurointerventional radiologists and we chose Dr. Berenstein at Roosevelt Hospital in New York City.
After receiving Katie’s MRI films and our letter of explanation, Dr. Berenstein called us personally. He had a commanding presence over the telephone. In the past we had spoken to so many doctors who were only vaguely familiar with our daughter’s condition and now finally we were talking to the man who literally wrote the book on embolization and using surgical glue to treat VOGM. He explained the procedure in great detail and told us quite frankly that our daughter needed to be treated immediately.
In December 2006, just a few weeks before Christmas, we traveled from Kansas to New York City so Katie could have her first embolization procedure. We were terrified. The first treatment was a success. Dr. Berenstein and his entourage of surgeons/nurses/specialists are amazing at what they do. Immediately we were impressed by his honesty and his desire to communicate with parents about all aspects of the surgery/recovery process. He was positive without getting our hopes too high and he was never condescending.
On the day of surgery he called us in to the operating room after the angiogram to describe just what his plan of action would be during the procedure. Although the waiting period during surgery was excruciating, we finally felt peace knowing Katie was exactly where she needed to be.
After the December 2006 trip, we subsequently made four more visits to New York. Each time Dr. Berenstein and his team carefully and methodically closed arteries leading to the Vein of Galen, eventually shrinking it in size. In May 2008 we visited Dr. Berenstein and an angiogram revealed the vein was finally normal size. When Dr. B (as we affectionately refer to him now) called our cell phone for what we thought was to be the typical summons to the operating room, instead he said, “there is nothing more to do, you are done with me now, you can go home.” We were stunned and so very relieved. We have a picture of Dr. Berenstein with Katie displayed prominently under a cross in our living room and on the frame is the word, “Believe.” It’s a word we held tightly to after her diagnosis and now it means so much more.
Update: In September 2009 a follow up MRI (almost two years after surgery) revealed no changes in her VOGM. Once again, Dr. Berenstein called personally to give us the good news. In the future, Katie’s follow up looks to be minimal with another MRI in two years, then five. As long as her hydrocephalus remains stable her prognosis is good. Although her future will include a restriction on G-forces, and some of the very prominent veins on her face may never go away, there should be no lasting effects of her malformation.
Now when we tell the story about Katie, her diagnosis and our journey, we will forever sing the praises of God, Dr. Berenstein, Bill, Elizabeth and Liam Isaacs and the Vein Of Galen website. They paved the way for our daughter’s recovery. We are humbled and blessed by their help.
When we ask Katie why we travel to New York she says, “that’s where Dr. B fixes my brain.” Yes, he certainly does.
I hope our story was helpful. It was important for me to post our journey because we are grateful this site exists. VOGM is mysterious with very little information. We wanted parents to know there are stories of hope.
Please feel free to contact us.
Contact information for Dr. Berenstein below.
Dani, Doug and Katie Stone
Dr. Alejandro Berenstein