INTRODUCTION

 

The room was quiet, too quiet. There was not even a sound emanating from the ultrasound machine. The radiologist was avoiding my gaze as she intently studied the screen. I redirected my head, shifting my eyes to my husband. I smiled a hopeful smile. Suddenly, the radiologist turned and bluntly addressed us, "I see gross anomalies with this baby.  We'll have to call your doctor." In an instant, my dreams of a beautiful, precious baby evaporated and I was plummeted into a swirling nightmare. Inside, I was drowning, gasping for air, choking on the bitter knowledge that something was very wrong with my baby.  Although the sun was shining and all around me bustled with life, the storm inside me raged and torrents of tears rushed into my pillow. Yet God did not abandon me; for, by His grace, I was rescued. I realized that this baby was my child, my gift, to love unconditionally for as long as I would have her. (Doreen, mom of Gianna who was born with Trisomy 13)

 

Dear Parents,

 

You've received devastating news that your precious unborn baby has a fatal condition or physical or mental limitations.  If only you could wake up from this nightmare. If only the diagnosis were wrong. If only your baby could be cured.  Your mind races through  "if only's."  But there is only "what is."

 

Now you face"what will be."

 

You can legally choose to end this pregnancy and, with it, your child's life. Or you can choose to continue this pregnancy until its natural end.  Much has been written about ending your pregnancy. This booklet is about continuing it. 

 

SOME FOLKS I KNEW

 

When I was in high school, the general practitioner's daughter gave birth to a daughter with Down syndrome complicated by physical conditions.  The family nicknamed her Little Pumpkin Head and loved her to pieces until she died while still a youngster.   

 

About that same time, another doctor's wife gave birth to Joey, another Down syndrome youngster who grew into a boy so active that his parents had to heighten the fence around their yard so Joey wouldn't climb over it. 

 

After I married, I wrote a newspaper article on Ben who was in his sixties and fighting terminal cancer.  Two days before he died, I spent the night with Ben as one of many offering respite care to his family.  Through the night, Ben's entire life seemed to parade before him, and he would call out, "Jesus, help me." 

 

A few years later, I saw a photo of a three year old child with two lower limb deficiencies and immediately had a sense that she was our daughter.  We adopted Kay-Marie who today is a high school graduate with a career in floral design. 

 

In 2005, I received a phone call from a friend whose grandson Joseph had been diagnosed in utero with the fatal condition anencephaly.  Hospital staff had given her daughter literature about "pregnancy interruption."  She asked me to write a booklet about birth.  Shortly after agreeing, I met a second couple whose unborn daughter Arianna had been diagnosed with anencephaly.  Joseph was born first and lived four days.  Arianna was born by Caesarian section on her due date.  She, too, lived four days.  Both children had a stream of hospital visitors, both were fed, both seemed to recognize their mom's voice, both had beautiful funerals followed by pot luck dinners, and both forever changed the many people who met them.

 

PRENATAL DIAGNOSIS

 

Today Down syndrome, limb deficiencies, anencephaly, and over 800 other adverse conditions can be diagnosed prenatally.  As many as 80-90% of the parents of these children choose to "interrupt the pregnancies."  Those who don't are thought to be heroic by some and foolish, deluded, or ultra religious by others.  However, such adjectives are wildly inaccurate.  Parents who choose to bring compromised babies to birth are ordinary parents who want to give their children every possible chance. They know that they'd never "interrupt" Ben's life once his diagnosis of incurable cancer was known, so why "interrupt" their baby's life?  Such parents understand that love, not intelligence, makes us human.   They know that physical and mental limitations mean adjustments, but folks can live full lives with those adjustments.  They sense that their child deserves nurturing, not death.

 

I only wish that, before I die, I can get across to one person that they must not close the door on the gift of their handicapped child.  They are being given something wonderful.  The doctors say, "Let's do an amnio. Let's see if the baby is missing brain cells." What are brain cells?  So what if Joey had a minimum sized brain? He could give love, and love is what matters.  If I had to do it all over, I would. People say, "What did I do to deserve this child? Did I do something wrong?"  My two handicapped children have helped me grow spiritually. Today folks look upon suffering as bad.   The suffering you embrace is the suffering of the diagnosis, of professionals and other people who think you should just end it all now.  I look at all these people and I think, "You are not blessed like I have been blessed."  (Erin, mom of Joey who was born with Trisomy 18 and Patrick who was born with autism)[1]

 

COMING OUT OF THE CLOSET

 

While writing this booklet, I received an email asking if the booklet was going to be "pro-life."  The couple didn't want to share their story about bringing their baby to birth unless I were going discuss termination as an equal "loving choice."  As a parent of four living biological children, four miscarried children, and one adopted child with limb deficiencies, I know a little about parenting.  Here's a condensed form of my reply:

 

Since 1974, I've counseled women in pregnancy crisis and also counseled some who terminated because of it.  Every woman who faces a crisis pregnancy is under extreme pressure, and the desire to "get things back to normal" can be overwhelming.  I know the fear, pain, and despair that these women feel and understand how much support they need.  I've seen the end results of all choices--continuing the pregnancy with rearing the child, adoption, and terminating--and I honestly believe that termination goes against a woman's strongest instinct to nurture and protect her young.  Termination is chosen out of terrible fear and lack of external and internal supports, but it violates the female soul. 

 

Having grown up on a farm, I have seen dogs and cows give birth and nurture dead young, trying to get them to nurse and to rise.  I have never seen an animal destroy its injured or dying young.  When the mother animal finally realizes that the young is dead, she begins to whine, low, or moan in instinctive mourning.   We humans are mammals, too.  Our female instinct is strong.  In nature, no woman would destroy her young, no matter how sick or deformed they were.   She would do all she could to nurture and sustain them.

 

For women who terminate, I feel only love and compassion.  But I can't say that termination is a good option.  I know that women can think that it is, because doctors, family, society, and even the women themselves can list good sounding reasons causing the baby's death is preferable to letting him live.  But "head" reasons don't reach the heart of the woman who aches instinctively to protect and nurture.  When women terminate, more than the baby dies.  Something very primitive and tenderly beautiful dies in the mother.   And something very primitive and tenderly beautiful is taken away from the rest of us.   

 

I know that women who terminate often say they are at peace. They say they made a loving choice and have no regrets. They may feel that way until they die. But I've seen too many other women push past the rhetoric and fall apart because they terminated years before.  Termination ends a life that could have gone on much longer.  We don't know what gifts that child would have brought in those subsequent days, and that's the question that eventually lodges in a mother's heart. 

 

LOVE AND SACRIFICE

 

Life is a great web in which one plucked strand reverberates throughout the whole. Everything in nature, including the human spirit, grows stronger through adversity.  When parents trust more than they fear and allow their babies to be born, we all grow a little stronger in our commitment to one another.

 

Human mothers are not assembly line workers who allow only perfect products to pass inspection.    Each mom's baby is unique and precious to her.  To deny, minimize, or ignore a mom's instinct to nurture and protect her young, no matter how compromised they may be, is to war against her soul.

 

Women are stronger and wiser than society wants to believe.  Women humanize the world because we know how to truly love.  Love demands sacrifice, and mothers know all about sacrifice.  A mechanistic, productive, worldly mind cannot understand why a woman would continue a pregnancy with a baby who has certain difficulties.  But love sees more clearly than reason.  Reason looks with the mind, but love looks with the heart.

 

Jennifer followed her heart with Mikey. 

 

When I was 20 weeks pregnant, we learned that our worst fears had come true.  Mikey’s condition was diagnosed as “cloacal exstrophy,” an extremely rare birth defect affecting the bladder, urethra, genitalia, large intestine, spine and lower extremities. In addition, he had a kidney that had stopped growing and functioning. It was recommended that we terminate the pregnancy. We decided to continue on.

During my 28th week of pregnancy, a follow up ultrasound detected no amniotic fluid.  We were informed that Mikey’s only functioning kidney had quit working. They told us to expect to lose Mikey in the womb or within days of his birth. They reminded me that termination might be better than continuing on.  With consultation from a neonatologist and perinatologist, we made the decision to go to term and to deliver vaginally. Doctors couldn’t see any benefit to delivering via C-Section. It was also determined that it would be best not to monitor the baby during birth. They didn’t want to find the baby in distress and have to do an emergency C-Section for a baby who wouldn’t live.  .

The anxiety I experienced is indescribable. I prayed that I would make the right decisions. I feared that I’d bring a child into the world who would only live to experience pain and suffering, and I ached to welcome him into a world of love and comfort. I wondered if it would be more peaceful for the baby to end things, but the thought of not giving him a chance was devastating. I tried to put my religious beliefs aside to make unbiased choices. However, I learned quickly that I had to entrust my son’s fate to God.  I just wasn’t big enough for this. The doctors assured me that they would keep our son pain-free and that he’d always be peaceful. It brought me great comfort to know that I still held hope for my unborn son and that I had entrusted his life to God.  .

 

All I remember is utter silence when Mikey was born.  I thought he had died.   The doctors whisked Mikey to the corner of the room, assessing the situation. A few minutes later, we heard a faint cry. I’ll never forget the relief I felt.  A nurse brought Mikey over to us. I can hardly remember anything but trying so hard to engrain the memory of his face in my mind. He was a beautiful baby, and I thought that this may be the only time I would ever see him.   A team of surgeons operated and found that his bowel had attached to his bladder.  He was born without an anus, so they made a colostomy. He also had a mild form of spina bifida, so the neurosurgeons untethered his spinal chord. The doctors still say they’ve never seen an anatomy quite like Mikey’s. My amniotic fluid was gone because Mikey was recycling it through his own little body.  His only good kidney was indeed working. I will never forget the day the nephrologist told us  “this kid is going to make it!” My husband and I were completely dumfounded. It was our happiest moment ever!

I am glad that we gave our child the chance he deserved. Today, Mikey is an amazing toddler, doing all the normal things that kids do. If we didn’t tell someone about his “problem” they would never know that he wasn’t “normal.” Mikey has brought a joy to our lives that we never knew before.  Even if Mikey had not made it, I could live with myself as I did everything possible to leave matters in God's hands.  It was a maternal decision.  I am responsible as his mother for giving him every opportunity possible.  I am responsible for protecting this child as I am pregnant with him.  What is the value of each life?  God makes those decisions.  He decides how long you are going to live.  There is a reason for that baby being there. Mikey opened so many closed doors. He made me a more compassionate person.  I don't look at situations the way I used to.  You really understand the value of life and the value of each day after you go through something like this.  I was listening to a country western song about a guy who gets diagnosed with something or other.  He said, "Wouldn't it be great if everyone lived life like it was their last day?"  That makes sense to me.  We don't know how many days we have with Mikey so we try to make each day an incredible day.  (Jennifer, Mikey's mom)

 

Not every story in this book ends with a living child.  Mikey's life is tenuous. His single kidney appears to be failing.  However, this book isn't about babies who live and babies who don't.  It's about courageously giving babies a chance to live as long as they can.  Jennifer and her husband gave Mikey that chance.

 

UNEXPECTED GIFT

 

A serious prenatal diagnosis robs you of the baby you thought you had.  But you never really had the baby you thought you had.  You really had the baby you have now.  An older book on parenting a child with a disability states, "You can believe that your child's condition is a death blow to everything you've dreamed and worked toward until now.  Or you can decide that you will continue to lead the life you'd planned--and incorporate your child into it."[2]   I'd like to add, "Or you can trust that the future will be better than what you planned because this particular child will be in it."

 

Luke's life was a journey without end. There has been much more joy than sorrow, believe it or not. I miss my baby, but he did have a wonderful life. All he knew was love, and he accomplished his purpose of being sent to this earth. We try to continue to share his message of God's love for us and our need to accept His plan for our life and not fight against this plan. For those of you starting this journey, you will never be the same.  You will be better. It is a hard journey but our babies are more than worth the effort. We don't look back in regret. We continue to look up in faith.  God Bless (Sue, mom of Lucas Adam who was born with anencephaly)

 

Today's strength is enough for today.  Strength for tomorrow will be given when tomorrow comes.  Look through the lens of a mother's love to bring your child as far as he or she can go.  Do not be afraid.  Trust your instincts and fight for your child.  This book, and the parents who share herein, will support you.

 

Madeline Pecora Nugent

 


 

 

[1] Stories shared by parents are in their own words. Some stories have been condensed.

 

[2] Simons, Robin.  After the Tears:  Parents talk about raising a child with a disability.  Denver, Colorado:  Children's Museum of Denver, 1985, preface (no page number).