Creative writing in... yes, dental school.

For an assignment in his current medical ethics course, D wrote a narrative about our experience with J. I thought some might like to read it. He is a great writer. He got some great comments from his classmates and, though not the point of the writing, I think it was a good assignment to help them understand each other further. I have of course edited out the names for initials, my escape from going private. :-)

My wife and I walked into the doctor’s office excited to find out if our second child was a boy or girl. When we left two hours later, we had an appointment to see a perinatologist and we had been told the ultrasound showed something wrong with our child’s brain development. We were told to prepare ourselves for the possibility that the condition might be lethal.

After agonizing over the possible outcomes for five days, we met with the perinatologist who took only a few minutes to make the diagnosis. Within a matter of a few minutes, we went from being familiar with the term “spina bifida” to knowing causes, related issues, surgical options, physical limitations and a multitude of additional details and sources of concern for our unborn child. We were also informed that he was a boy. We named him J.

The doctor explained that J’s spinal cord had not developed properly and was left exposed to the external environment. The interruption of normal flow in the cerebrospinal fluid had led to the development of hydrocephalus. Abnormal development also left him with bilateral clubbed-feet. We were told he would have a twenty-five percent chance of being learning disabled.

After learning of the challenges we could expect, the doctor asked us if terminating the pregnancy was a consideration for us. Our personal values and beliefs allowed us to eliminate that idea without further discussion or consideration. My wife and I were acquainted with people who had spina bifida and we knew the condition was not life threatening for her or for J. We decided we would accept whatever challenges would be associated with J’s condition and figure out a way to make the most of his abilities rather than focusing on his limitations.

We were told that to prevent further damage to the spinal cord, J would need to be delivered by C-section. Shortly after birth, J would need to have the lesion on his back closed by a neurosurgeon in order to cover his exposed spinal cord. It was anticipated that he would need a shunt to relieve the pressure from hydrocephalus and that he would require orthopedic treatment to correct the position of his feet.

Almost as a side note, the doctor mentioned that a previous patient had undergone an experimental surgery where the child’s lesion had been closed in utero. He told us that the experimental status of the surgery meant that studies had not been performed to determine if there were any benefits to justify the risks associated with operating on an unborn child. The possible benefits of the surgery were only theoretical but we were told the outcomes to that point looked promising. He then asked if we would like him to pass our contact information along to the patient and see if she would call to give us more information. We told him that we would appreciate it if he would have her call us as soon as possible.

We quickly established a friendship with the patient and her husband who told us of their experience and introduced us to other parents who had undergone the procedure with the hope that their child might benefit in some way from the theoretical belief that having the lesion repaired in utero would prevent additional damage to their child’s exposed spinal cord. We were made aware that the surgery was only performed at three hospitals in the United States. All of the couples we met had chosen Vanderbilt University Medical Center in Nashville. A technique for performing the surgery had been pioneered at VUMC by Dr. Joseph Bruner, an obstetrician, and Dr. Noel Tulipan, a pediatric neurosurgeon. We were given the contact information for their team. The next few days consisted of blood tests, an amniocentesis, a fetal MRI and a multitude of consultations over the phone with the fetal surgery team at Vanderbilt to determine if J was a likely candidate.

We were pressed for time since the procedure was limited to those who were between 22 and 26 weeks gestation and we were at week 24. While adjusting to a fast-paced schedule of meeting with various specialists, we had a two-year-old daughter to care for at home and I was in the middle of my last year of undergraduate education and applying to professional school. With everything going on, we were also dealing with the emotional sense of loss that accompanied the news that our child would not be able to do many of the things that we often took for granted.

Due to the experimental classification of the procedure, our health insurance company denied authorization for payment. This necessitated some scrambling on our part to come up with the $35,000 to pay for the surgery that we felt sure would decrease J’s potential for additional physical disabilities and improve his quality of life. A [person close to our family] promised to pay for the procedure and asked that we keep the source of the donation anonymous. The proper arrangements were made and we flew to Nashville to meet with the team at Vanderbilt. J would be patient #112 for the experimental surgery.

For two days we met with everyone who would be providing care for my wife and for J. We were told of all of the known risks of performing surgery on an unborn child. We toured the NICU to meet the doctors and staff that would be required to care for J if the surgery caused my wife to go into labor and deliver him fourteen weeks early. We met with the Clinical Ethics Department to discuss our reasons for seeking an experimental treatment that had the very real potential of harming our son while having no concrete proof of providing a benefit to him. Having to verbalize our reasoning gave us a chance to evaluate our thoughts and feelings and express our need to do what we felt was best for J. We knew that he would face real challenges throughout his life and that the damage already received was permanent, but we felt that we had an opportunity to do something that might help him in some way and this compelled us to move forward with our decision.

Dr. Bruner explained that the surgical procedure involved making an incision across my wife’s abdomen, removing her uterus and making another incision to access J’s back. The amniotic fluid would be removed and placed in a warming tray while Dr. Tulipan covered J’s spinal cord. The amniotic fluid would then be returned to the uterus and everything would be put back in its place. My wife would then have to recover from a C-section while J continued to move and grow.

For the next two and a half months my wife was on bed rest to prevent preterm labor. She had to wear a monitor that checked for contractions and she had a subcutaneous terbutaline pump placed in her thigh to administer enough medication to prevent labor. I was responsible for changing the site of the needle for the medicine delivery tubing. The medication made her heart race and her hands shake and she certainly didn’t enjoy having me place a new needle in her thigh every few days.

The day J made his appearance for the second time I was in the operating room with my wife. We joked about him being a “Jack in the box” since we had popped him out, put him back and were now popping him out again. Right after he was born, the attending physician took me aside and said that she needed to tell me something that might be of concern to me. She then said that J had an extra digit on his right thumb. I laughed and said, “He has an extra thumb, that’s cool!” She told me she was surprised by my reaction since she expected me to be a little upset. I told her that with everything else going on with J, I was not very concerned about him having an extra thumb.

J was transferred to the children’s hospital shortly after he was born and I spent my time running back and forth between his and his mother’s hospitals. One night, when J was a few days old, I was alone with him in his hospital room at about three in the morning. As I looked at him with all of the leads and tubes that were connected to him, the reality of the challenges he faced seemed so overwhelming to me and all I could do was hold him and sob uncontrollably. I now recognize that was the moment I realized our lives would be forever altered by having a child with special needs.

The surgeries, infections and illnesses started almost immediately. During his first two years of life, J spent about one week per month in the hospital. I don’t know if it was truly the case, but it seemed that the 45 minute drives from our home to the Emergency Department at the children’s hospital were almost always made in the middle of the night. It didn’t take long for us to realize that professional school was out of the question. I left school, lacking only a handful of classes to graduate and entered the workforce hoping to find something to replace my lifelong desire to be a healthcare professional.

Eventually, J’s health status became more predictable and we learned to deal with the many aspects of his care. We learned that he would need a shunt for hydrocephalus for the rest of his life, he was deaf in his left ear, he had kidney, bladder and bowel issues, he had no feeling in his legs below the knees, he required the use of a wheelchair, he was nearsighted and he would need braces. We also found out that he is patient, loving, kind and very bright. It was a great relief when we realized that J was not learning disabled. He enjoys reading more than any ten-year-old I have ever met and he has an incredible memory for details he has read.

We have learned many things about J by caring for him but we have learned even more about ourselves, both individually and as a couple. We learned that we never have to look farther than the next hospital bed over to realize that we don’t need to feel sorry for ourselves. We learned that every child is a gift. We also learned that we are capable of much more than we often give ourselves credit for and that experiencing difficult challenges is never a reason to give up on your dreams.

A few months ago the study was completed to determine the possible benefits gained by fetal surgery for spina bifida. The results were conclusive showing clear advantages to closing the lesion while still in the womb. We made the right decision after all.