Our child brought joy despite hardships
By Diane McNaughton
I still vividly remember a research paper I prepared in college on abortion and infanticide. As a 19-year-old who had experienced little of life's hardships, I wrote about the growing tragedy of doctors, judges and parents "deciding" infants out of existence because of their subjective judgments about a baby's future "quality of life."
The first sentence of that issue brief still echoes in my mind: "Being born less-than-perfect in America has become a capital offense."
Eleven years later, in an eerie twist of fate, my research paper became a real nightmare for my husband and me.
When we were expecting our third child, the first ultrasound of my pregnancy revealed that our 30-week-old son had a severe case of hydrocephalus, or "water on the brain." Somber radiologists told us that our baby's head appeared to be filled with more fluid than brain tissue, or may, in fact, be a fluid-filled cavity with no brain at all. The ultrasound technician, who discovered this defect later, told us that she had never seen a brain configuration like our son's.
Our sonogram's unexpected aftermath left us drowning in disbelief and despair. I desperately wanted to hit the "rewind" button and start the pregnancy again, with a clean slate and a perfectly formed baby. But as tempting as doctors made it seem, we knew in our hearts that we could not yield to their recommendations to end the pregnancy. And we were bowled over by their suggestion that they could deny our son the lifesaving surgery he needed after birth if his "quality of life" were judged to be substandard.
Doctors were careful to outline what our future might be like: our baby may never be able to achieve bowel or bladder control, to move his arms and legs, to see, or even to swallow. His hydrocephalus may occur in tandem with spina bifida, cerebral palsy, Down's syndrome or a host of other anomalies that soon became an unwelcome part of our vocabularies.
As the hours and minutes of my pregnancy ticked slowly by, we sought out specialists in Philadelphia who also surveyed our ultrasound screens with grim faces and predicted that our baby would be seriously disabled or deformed. Every book I read about hydrocephalus warned ominously that brain damage had already begun to exact its toll as cerebrospinal fluid pressed upon the delicate tissues of our boy's unfolding brain. Death was a real possibility.
But these warnings could not overcome our attachment to our baby. This was our son, our new baby brother, and we were not going to let him go quietly into that good night. We had already fallen in love with him and the idea of him. As much as we yearned to reshuffle the deck and play our hand over again, we knew we had no choice but to play the cards we had been dealt.
In spite of our grief, we firmly believed that it was God who had given us this innocent child, and God who would decide what his life would be like. If our baby were meant to die, we would allow him to go gently into God's waiting arms, without the brutality and finality of scissors and surgical instruments. We could never bring ourselves to take part in efforts to actively end his life.
If he were to live, we decided we would do all in our power to make his time here on earth-however fleeting- happy and meaningful. But before we could let him leave us behind, we had to make one last-ditch, no-holds-barred effort to give him the best shot at life. We decided we would find the most gifted doctors, and we would fight. We would do nothing less for any of our children.
With the help of my doctor-brother, we found one of the nation's finest neurosurgeons--Dr. Luis Schut at Children's Hospital of Philadelphia--who agreed to operate on our son after his birth. We found obstetricians willing to deliver our baby. We also asked to have a host of neonatologists, pediatricians, and perinatologists in the delivery room with us, ready to work on our baby as soon as his first cries were heard.
We merely went through the motions of living as we waited for my June 25th due date and the fateful minutes when our mystery package would reveal itself. My nights were plagued with nightmares, in which our baby's enlarged head ballooned ever larger before my horrified eyes.
During the day, I agonized over the effects a disabled brother would have on my son and daughter. I vacillated between periods of optimism and periods of sheer terror about mothering a child with a disability.
Always there was the nagging question--why us? And more troubling, why him?
Our family and friends activated prayer chains for our unborn baby from Philadelphia to Baltimore. Even though I could not help but feel some anger toward God for sending this heartache to our family, God really did walk with us every step of the way. Indeed, like the famous "Footprints" message, He carried us during the blackest times. He helped us in ways that far transcended coincidence.
Our son was born, appropriately, on Father's Day, 1993. On that sun-soaked day, two months of darkness and fear yielded to unimaginable lightness and joy. From the moment we held Christian Matthew ("Gift of God") in our arms, our lives were transformed. Despite doctors' predictions of a five-pound baby with a vastly oversized head, he was a perfectly proportioned eight-pound baby.
We were shocked at the doctors' miscalculations and outright mistakes. For every odd they had given us, Christian defied it. He was that 1 in 1,000 each time.
Three days after Christian's birth, a shunt was surgically inserted into his brain to drain away excess cerebrospinal fluid. At three months, he underwent follow-up surgery.
Even after the surgery, doctors discouraged us from being overly optimistic. They still gave Christian a bleak prognosis, predicting that he was most likely blind and "unable to learn." Their conclusions were based upon a CAT scan performed one day after his birth, which revealed that Christian had suffered a stroke in utero. Remarkably, his developing brain had formed around a blood clot in the lower left side of his head.
Today, we have a four-year-old son who proves to us every day just how wrong those doctors were, and how right our choice remains. He is a running, jumping, giggling example of how miraculously the brain can recuperate from trauma and reassign function to undamaged areas. He is proof that technology raises more questions than it answers, and that physicians are far from infallible. He is testimony to the inestimable resilience of a child who is loved.
Yes, our decision has sometimes meant anxiety and more than our share of doctors, infant development specialists, and hospitals. Yet, we have found such unspeakable joy at a time when we thought we would never be happy again. And we have found within ourselves such compassion for others.
This new life - who first entered this world with his downy black hair shaved off one side of his fragile little head, encased in a web of tubes and monitors - brought new life to our entire family and community.
We cannot bear to think of our lives without Christian. Knowing that a partial-birth abortion would have robbed us of the chance to witness his great promise, we have begun speaking out about the procedure, for other babies who may mistakenly be missing out on life.
We want to be that ray of hope that we searched for and never received during those agonizing final weeks of our pregnancy.
Since we left the dark confines of Children's Hospital in Philadelphia, we have rejoiced at Christian's every development, and thanked God for every smile and happy moment in his life. My husband and I rededicated ourselves to parenting, in the hope that somehow our love would make up for the unjustly rough start he was given in life. We wanted our nurturing to give him what nature may have deprived him of.
Each birthday and joyous occasion has been a triumph for all of us. They are tangible proof that Christian's life was a life worth saving. And Christian loves life. He adores the Orioles and Cal Ripken, Batman and Spiderman, the Angels in the Outfield movie, French fries, and especially his baby sister-his soul-mate in life.
To look at him, no one would know the challenges he overcame to be here. He has reached every developmental milestone, and has scored exceptionally well in measures of language and socialization skills.
Christian's latest CAT scans reveal a miraculous regrowth of brain tissue, and a regeneration of his brain that Dr. Schut has called "amazing" and "wonderful."
Many people have called Christian a "miracle baby." To us, that term is a redundancy, for we have seen first-hand the miracle that resides within every baby.
To grow from a complex collection of cells into a child who can pedal a bike, dive into a pile of pillows, and devour McDonald's Happy Meals-is a miracle recreated every day, over and over again.
Not a day passes that we don't thank God that Christian lived to see, hear, taste, touch and smell it all. Christian is so much a part of our family. He is so much a part of our lives. He is so much a part of me and all I hope to be. This undersized little four-year-old has made a gargantuan statement about life.
Although I have seen so much more of life now, as a mother of four children, than I did as a college sophomore, I still come to the same conclusion I reached in my school research paper.
Doctors should not be playing God in the nursery. Babies should not be rushed from womb to grave without ever having a chance to feel the warmth of the cradle and the softness of human touch.
Life is to be lived.
Epilogue: Only a day after I wrote this, Christian underwent "routine" shunt surgery at Hershey Medical Center. Four hours after the surgery, he went into cardiac arrest and fell into a coma from which he never awakened. He died on August 8, 1997. His heart valves, liver and kidneys are now keeping six children alive.