Co-Founder Jay Taylor gets published!

From The Heart of a Father: Essays by Men Affected by Congenital Heart Defects

Sydney’s Legacy

I always thought of myself as a strong person.  From birth I was lauded by my parents and grandparents for my size.  I was the third of four boys in my family, but ultimately the tallest and physically, the biggest.  My entire life I was an athlete, first as a swimmer and then in college I rowed crew and played volleyball for Drexel University.

I spent my teenage years absorbed in comic books and heroic fantasy novels.  Idolizing Superman and Tarzan and a thousand other archetypical heroes, I had fashioned an image of myself as a latter-day knight, confident in my ability to handle any twists life would throw at me.

In college, my own personal fairy tale continued as I met a beautiful young woman who, to my amazement, wanted to spend her life with me.  We graduated college and I embarked on a successful career as a financial advisor.  My wife Erin and I were married after she finished graduate school and we moved back to New Jersey, where I had grown up.  Shortly after we were married, we tried to concieve  a child.  We were unsuccessful and after a period of time, we sought out a fertility clinic.  This was a difficult time for Erin.  Many of our friends were having babies or already starting their families.  As we went through the different treatments, I was confident we would get pregnant and have a beautiful family.  I felt no small amount of pride in handling the adversity that we were experiencing.  It reinforced my own self image that I was able to handle things so well.

Then, in the summer of 2000, Erin called me at work with the news that she was pregnant!  That summer passed in a blur of happiness that had been missing for the past three years.  At the end of the summer, I got a long-desired opportunity to manage my own branch, though it would require some significant commuting.  In short, all was well with my world.

The sound of the first crack in the facade I built around myself wasn’t loud – an ultrasound technician recommending a pregnant woman come back because the baby was in a bad position seldom rang any warning bells.  We were so excited by the news that we were having a baby girl that we wouldn’t have noticed anyway.  The next day when Erin called my new office, it was a little more obvious.  In a trembling voice, she told me that on her return visit to the ultrasound facility, the doctor had identified something wrong with the baby, whom we had named Sydney.

“They think there is something wrong with her heart.”

I stood up in the middle of the office as fear like I had never felt flowed through my body like a wave.  On the other end of the phone, I could hear the devastation  in Erin’s voice and realized I was niney miles from home instead of across the street.  I guess I hung up the phone.  I must’ve told my assistants I was leaving.  I must’ve gotten in my car to drive down the NJ Turnpike.  I know I drove the turnpike because I went through an EZ Pass lane too fast for it to register, but I don’t remember a thing about what my thoughts were during that drive.

I know by the time I arrived home, I had composed myself to support Erin.  She had waited so long for this dream to come true and now it was falling apart.  While I had been driving home, she had been busy looking up heart defects on the internet.  The information had helped her to calm down, as many of the heart defects were treatable and we were lucky to live in an area with a number of fine children’s hospitals.

We spent the next few days on an emotional roller coaster.  We found out that Sydney had Hypoplastic Left Heart Syndrome, one of the most serious defects.  But we were bolstered by a conversation with our pediatric cardiologist, who laid out the course of treatment for this condition.  While the condition was undeniably serious, there was a great chance that with three surgical procedures, Sydney could have a reasonably “normal” life.  As any parent would, I grasped onto this hope like a drowning man grabs a ring buoy.

We also had a great meeting with the surgeon at St. Christopher’s Hospital and left with visions of Sydney being able to one day even compete in sports.  The hero inside of me was reassured that if we could remain strong through the remainder of the pregnancy and the difficult surgeries, all would be well.

I had never been a religious person.  the grounded side of me always had a great deal of trouble believing in things I could not see or touch.  Erin and I began attending church regularly before Sydney was concieved, but while she had a strong sense of Faith, I mainly identified with living the ideals espoused by our Episcopalian congregation.  But in the next few months, I found myself praying to a God I wasn’t sure I believed in – to get my little girl safely delivered.  Slowly, my illusions about my “strength” were being taken from me.

On March 8th, 2001, after a failed attempt at a regular delivery, our daughter Sydney was born via C-section.  She was beautiful and seemed normal to anyone who saw her.  Of course, we all knew the course ahead.  But sitting in the neonatal intensive care unit, surrounded by my family, as our priest and deacon baptized her in a special service, I couldn’t help but feel relieved and thankful.  Eventually the doctors convinced Erin and me to get some sleep, before I had to go with Sydney on the transport to the children’s hospital.

A few hours later, the doctors woke us up to say that Sydney had a serious episode of apnea.  They were able to revive her, but they were concerned about what damage might have been done.

When I arrived at St. Christopher’s, the doctors and nurses were already concerned about how Sydney was responding.  They were cautious to remain optimistic and as a new father, I had no idea how she should’ve been and remained blissfully ignorant.  Because of her C-section, Erin wasn’t able to make it to the hospital until the second day.  As soon as Erin saw her, she knew something was wrong.

After many tests and consultations, we learned the apnea episode had caused significant brain damage.  It had robbed Sydney of some of the most basic functions of life, including swallowing and coughing.  She rarely opened her eyes and never complained – even when the nurses drew blood from her heel.  Given all of these factors, the surgeries that Sydney would need were never really an option, though we didn’t realize it.

As the days became weeks the facade of my strength collapsed entirely.  We were constantly at her bedside, but I found myself looking for escapes.  We had many visitors, and I would sit with someone in the waiting rooms, while Erin would be in the critical care unit with Sydney.  Finally, one particular Sunday, I left with some friends to go to a comic book show for a few hours.  When we got back to the  hospital, I broke down, disgusted with myself.

Finally, as we approached the end of three weeks, the doctors helped us to come to the realization that Sydney would never have the surgeries she needed.  As Erin and I sat in our room crying, we made the decision to bring  Sydney home.  Over the next two days we prepared everything and brought her home on March 31st.

When we brought her home, we didn’t know what to expect but slowly all of our friends and family gathered at our house to be with us for Sydney’s last hours.  It was an amazing experience, as each person spent time holding her, which they were never able to do in the hospital.  As the hours passed, Sydney’s condition worsened and in the early morning of April 1, 2001, while held in her mother’s arms, Sydney died.

It’s hard to describe the sense of loss a father feels when a baby dies.  A mother’s bond with a newborn is visceral – they are connected for nine months in ways no man can really understand.  I wouldn’t attempt to describe what that loss is like.  Both parents are responsible for the care of a child, but for me the traditional father’s role is the role of protector.  With Sydney’s death came grief, and also a huge sesne of failure that I was unable to protect my child or my wife.  These circumstances were out of my control, but the image of me that I had held was shattered.

I’m not sure how we made it through the next few days, but we did, and soon we found ourselves outside a funeral home after making arrangements for a baby’s funeral.  I’m not sure who had the inspiration first, but we hit upon the idea of creating a scholarship in our daughter’s name.  We went to the bank and converted a savings account that we had created in her name into a scholarship fund.  In many ways, that was the beginning for me of understanding true strength.

In the years since Sydney died, the modest scholarship fund has grown into the Sydney Mae Taylor Foundation, a 501(c)3 that is focused on providing scholarships to children living with heart defects, providing funding for children’s summer camps, sending bereaved parents to the Compassionate Friends national conference and donating to medical research.

For me personally, I have come to understand a different kind of strength.  I have learned that it is not so much the strength to lift something that matters, but the strength to lift someone.  I’ve watched as Erin supported her mother through years of a difficult illness and eventually made the decision to let her go.  I watched my mother and father spending his last three months together after he was diagnosed with cancer.  And I’ve seen my mother continue to embrace life in her children and grandchildren since he passed.

And in myself, I’ve come to appreciate my own strength when working with children in our youth group, coaching volleyball, or working to grow the Foundation.  I appreciate being a father to my three other children and a husband to my wife.  From that smallest and frailest of hearts, I learned how to be a truly strong person.

(Reprinted with Permission from Baby Hearts Press.  To order this book, visit www.babyheartspress.com or www.heartfather.com.)