Julia and Dr. H

On Monday, Julia and I headed to Tufts Medical Center in Boston for her once every two year check in with her neurosurgeon Dr. Carl Heilman. For those of you newer to the blog and our lives, Julia was born with a condition called aqueductal stenosis, a form of hydrocephalus. 

When we first met Dr. Heilman, I was still pregnant and less than a month from our due date. We had been told by other medical professionals that the likelihood of our child surviving was very slim. I had had a high level ultrasound which revealed that there was no brain tissue in the baby's skull and that the baby was most likely anencephalic. We had been called into Boston by Dr. Heilman's office. 

The doctor we met was boyishly handsome in his white coat and blonde hair, soft-spoken, kind, and matter of fact. He had a plaque on his wall saying that he had graduated from the University of Pennsylvania - the school my Dad and sister Laurie had gone to. By the date, I could tell that he was younger than Mark and me. We sat down in his small, wood paneled office and he told us that he thought there was a possibility that our child may have a condition called hydrocephalus. He pulled a white piece of plastic tubing attached to a small oval object from his drawer and explained that it was a shunt and it could drain fluid from the brain. He gave us no promises but told us to keep working with the OB doctors at Tufts and to deliver the baby in Boston.

We had already been grieving for the eventual death of our unborn child at birth. Mark and I walked out of his small office, looked at each other, and didn't know what to think. We went outside and cried together. What did he mean? 

As the weeks went on, it was emotional roller coaster. The baby inside me got the hiccups a lot and that made me cry. Mark was a rock - he had already lost his father at a young age and his mother a year after we were married. I'm not sure how I got through the next 3 weeks. I do know that my work at Classic Elite kept me going. We were in the end stages of desktop publishing our fall collection of patterns and I had a lot to do to get my part ready for the printer. I remember finishing up my last pattern and handing it off to Lori Gayle who would take care of sending all the files to the printer. 

That evening, my water broke and I went into labor. We drove to Boston and checked in. We were met by a huge team of people including doctors and NICU nurses. It is all pretty much a blur to me although I do remember Dr. Sabrina offering me the chance to deliver naturally. I had already known that I would not physically be able to get the baby's head out because it was so huge so that wasn't an option for me. Mark and my sister Laurie were there with me. I just wanted this part of my life over with thinking that the outcome was going to be more sadness. 

The baby was delivered by c-section. I remember a kind NICU nurse bringing the baby to me to look at. It was a little girl wrapped in that white pink and blue flannel blanket that every hospital seems to use. Her head was incredibly huge and swollen although her little eyes shone beneath the misshapen forehead. I didn't know what to think or feel. The nurse said to me - and I will always remember it - "Your baby is going to be alright."

The NICU at Tufts was an amazing place. The nursing staff kind and supportive. Julia had surgery on Day 4 because she had been born over a weekend. Dr. Heilman, with his gentle manner, came to my hospital room and explained what he had done. Then it was time to wait to see what would happen after surgery. Julia's head began to shrink due to the slow loss of all the fluid which had been blocked from leaving her brain at the aqueduct of Sylvius in the ventricular system while in the womb. We were there for 10 days. They sent us off into the world with no hopes of a normal child, nor no predictions - good nor bad - of what our child would be like nor our lives after. Wait and see. And that is what all parents do, isn't it? 

We have been visiting Dr. Heilman now for 17 years. In the beginning, we seemed to live at the hospital next to Chinatown in downtown Boston. Julia had 8 surgeries before she was 2. Her last revision, I was told the other day, was in 2004. Our appointments are down to once every two years. Last week, when Julia and I were planning our trip, the three of us talked about Dr. Heilman and how he was the reason she was here on the earth. He is our hero and shining star, along with all the other kind people - doctors, nurses, teachers, special ed coordinators, school administrators, family and friends who have helped Julia along and helped Mark and I navigate the waters of having a child with special needs. 

When Dr. Heilman walked into the room the other day, he was the same soft-spoken kind man. His hair is no longer blond but white. He is now the Head of the Neurosurgery Unit at Tufts Medical Center. The office has grown under his guidance - there is now a large waiting room full of patients. There are residents learning to be neurosurgeons, multiple secretaries..... it's a busy place full of people navigating the medical system wondering what is to come. 

As I sat there in the small white office, I couldn't help but tear up. Here was this beautiful young woman sitting on the table she was laid down upon all those years ago on the 7th floor of a hospital in Boston. Julia asked Dr. Heilman good questions about her shunt, about what to expect as she got older. She told him she is afraid her shunt will pop out of her head and he quelled her fears. We talked about her starting to learn to drive a car (we haven't begun that part of the journey yet) and about school, her favorite subjects and things that she isn't good or comfortable at, about sports activities that she hasn't ever been good at - due to her condition. We asked about the ability of a woman with hydrocephalus having a child. It was a good appointment. Dr. Heilman said "I'll see you again in two years. When you are an adult, I no longer need to visit unless there is a problem." We talked about how she would recognize a shunt malfunction and problem. 

It's been 17 1/2 years since I first met this kind and talented surgeon. It's hard to fathom the impact his talent has had on our family. I know there are other doctors, researchers, and medical implant companies behind the success of Julia's life but for me - Dr. Heilman will always be our hero. Thank you kind man.