Henry
This is a letter about our beautiful little boy, Henry Beckett Mercier.
We found out at 20 weeks gestation that he had Hypoplastic Left Heart Syndrome. We were terrified. Two weeks after his diagnosis, we found out about an experimental new surgery being pioneered at Boston Brigham and Women's Hospital. We are in Indiana, but within 24 hours we were on a flight to Boston. This new surgery had produced startling results in children who would otherwise be born with non-functioning left ventricles. In more than one case, the babies were born with their hearts functioning within a range requiring no further surgical intervention. In most every other case, the children's prognoses were significantly improved.
We were the 24th case in the country to undergo this experimental surgery - a balloon catheterization of our son's tiny aortic valve, in utero, at 22 weeks gestation. The cardiac research team in Boston devoted a dozen doctors to our care in the operating room. Their precision was miraculous and breath-taking. The surgery was a huge success. Within an hour after surgery, the cardiologists were watching on echocardiogram the instantaneous improvement in the function of our son's aortic valve. We were tremendously hopeful that this surgery might very well save his life and might even save him from having to undergo any surgeries after birth.
It was not to be. Henry Beckett was born on October 4, 2004, 6 weeks early. His prematurity left him without the extra time he needed in utero for his heart to repair itself. He was born tiny and all the more weak. His birth was also very frightening. We did not make it to the hospital. He was born in a lobby of the Ronald McDonald House in Cincinnati, aided by the fireman of local station #32. He was born in full cardiac arrest and had to be resuscitated on site. I never got to hear him cry. By the time I got to the hospital, he was on life support.
He had his first open heart surgery at 48 hours old and just a little over four pounds. The first hospitalization lasted 8 weeks. He did not have his first experience of life outside of the hospital until we took him home on the day before Thanksgiving 2004. We drove the three hours home from Cincinnati Children's in a blinding blizzard with a medical nurse waiting at our doorstep at 1:00 a.m. with oxygen, monitors and syringes of every kind.
Henry Beckett spent three months at home. It was all that he would get to see of the world.
We left for his second open-heart surgery in February of 2005. The doctors all assured us that this surgery would likely be a quicker stay, a week to ten days at the most. Henry Beckett never came back home. He languished in the hospital. The second surgery went well, but he never quite recovered. He would have frightening crashes, emergency catheterizations, placement of a stent in his tiny aorta and many weeks on a respirator in the cardiac intensive care unit. Finally, the first of June 2005, he was listed for a heart transplant.
We waited a little over 100 more days for Henry's new heart. During this time, he struggled mightily. He would periodically make it to the step-down floor, only to be rushed back to the intensive care unit where he would spend weeks on a respirator with drainage tubes in his chest.
His new heart came on September 15th, 2005. We thought we were home-free. He got through the transplant well. We wondered what he must have felt with a healthy heart beating in his tiny chest. We were beside ourselves to have our baby healed.
But, again, it was not to be. First, he suffered the most severe reaction to the anti-rejection medication a child can suffer. His brain began to swell and he went blind for a time. We were terrified. He recovered from the drug reaction, but his circulatory system was too damaged from the battle he had already fought to sustain his new heart. Forty-six days after his transplant, he suffered a massive stroke and passed away in surgery. It was October 31, 2005. Our baby was just 13 months old.
It is impossible to comprehend the weight of this grief unless you are carrying it inside your own heart. The loss of a child is an anguish and a longing unlike any other. Henry Beckett's passing was, in fact, a double loss. The hope and comfort owed to his donor family, that their child's heart might beat strongly in the chest of another little child, died on that day along with our son.
Our son, Henry Beckett, was the first baby the cardiac surgeons at Cincinnati Children's had ever seen who had undergone the unique, experimental surgery first pioneered at Boston Brigham and Women's Hospital. After their experiences with Henry and his struggle for life, they began sending members of their cardiology staff to Boston, to train themselves to do this potentially life-saving surgery. I saw other miraculous, new things happen when Henry was with us, including the first child at Cincinnati Children's sustained for a time on a Berlin heart.
In our walk through the blinding darkness of our grief, we have met many other families who have lost children to congenital heart defects. Among our new friends is a couple, now in their upper 70's, who lost a beautiful little girl named Anne forty years ago. Anne would be my age now. She died when she was two and never learned to walk. In talking with this couple about their daughter Anne, I realized that Anne might very well have survived had she been born when my Henry Beckett was born. The advancements that have been made in pediatric cardiology since Anne's struggle are remarkable. I mourned for little Anne's passing. I felt like she was in some sense a victim of the time in which she was born. In the same way, I mourn anew for my own beautiful boy, because I honestly feel that, had he been born 5 or 10 years later, he might have had a significantly better chance. Being among the first families to participate in the experimental fetal intervention surgery at Boston and watching the surgeons and cardiologists at Cincinnati Children's explore new ways of treating the children there, I can see the dawn of new and life-saving advancements in the field of pediatric cardiac research. It's devastating to think that a child who might be saved through fetal intervention surgery could pass away without benefit of that surgery because not enough cardiologists are trained to help. We owe it to every family drowning in worry and grief to ensure that their child will receive the best possible care by doctors who are trained in the latest advancements in pediatric cardiac care. Every child deserves the gift of the best possible chance at life. Congenital Heart Defects affect countless children. Cincinnati Children's Hospital has a double wing filled with nothing but children with cardiac defects. My son spent 10 months of the 13 months of his life in the confines of a hospital. For the last eight and a half months of his life, he never felt the sun on his face or breathed the outside air. He died without ever experiencing again those simple pleasures. I implore you to devote your heart and mind to serious consideration of this issue. I beg you to listen to the stories of grief and loss, to recognize the incredible number of families who have been devastated, to feel the weight and urgency of our cry, and to heed the call to help. It is in loving memory of my own beautiful son, Henry Beckett Mercier, that I write this letter.
With overwhelming grief and unwavering hope,
Elizabeth E. Mercier
Henry Beckett's mommy