*all names and identifying details have been changed to protect the identity of the individuals.

Angela and her husband were raising two healthy boys when they found out they were expecting another baby.  When they scheduled the first ultrasound, Angela’s husband wasn’t able to join her because of his busy schedule as a new physician.  A seasoned mother of two, Angela was confident she knew what to expect from this basic exam and didn’t mind going alone.

As she lay in the darkened room and the technician continued to slowly scan her belly, Angela began to get impatient.  When the quiet young lady excused herself to get the doctor she felt the first stirrings of concern but quickly pushed the thoughts from her mind.  The radiologist sat and began to scan her belly and after what seemed like a very long time, he finally voiced his concern that there was something wrong.  He suspected that Angela’s baby had spina bifida.  Angela could barely breathe.

She still doesn’t recall getting dressed or walking out into the parking lot to phone her husband. He recounts their initial conversation.

 “I remember being paged to the nurse’s station and as I reached for the phone the duty nurse said it was my wife.  That freaked me out. Instantly I thought something had happened to one of the boys. I had completely forgotten about the ultrasound appointment. When she told me, I wavered between my doctor self and my husband self. Spina bifida. Wow.”

For the two weeks following the amniocentesis as they waited for the results, Angela felt as though she were sitting on a time bomb.  They couldn’t know what to expect because of the nature of spina bifida itself.  The severity of the disease varies widely depending on the portion of the spine affected.  Additionally, it is difficult, if not impossible to tell via ultrasound how the child will be affected.  As the baby develops in the womb, the location of the opening in the spine becomes more and more clear. The actual placement of the defect determines how much paralysis there will be in the legs and feet. The higher up the spinal cord the spina bifida starts, the greater the degree of paralysis.  The actual spinal cord defect can be surgically corrected after birth, but damage to the nerves is permanent. In addition to paralysis, people living with spina bifida can expect to have difficulty with bowel and bladder control and loss of sensation in those areas.

The possibility of a positive Spina bifida test posed a definite moral challenge for Angela and her husband, Tim.  They both identify strongly with the pro-life movement and are very involved in their local church.  Angela considers herself to be strongly pro-life and has since she was in high school.  Tim joined several pro-life protest marches as a college student and, upon getting his medical degree he joined a group called Physicians for Life.

Because of his education as a physician, Angela’s husband was in the unique position of being able to imagine and understand the particular difficulties a child with spina bifida would face.  Along with the paralysis and lack of bowel and bladder control, he was concerned about mental deficits, seizures and physical deformities that are part and parcel of this particular syndrome.

 “He said to me one night, ‘Now I get it. I understand why this is such a difficult decision for some people.’ We absolutely agonized watching our two healthy, strong boys run and play. Everything they did – even the most mundane things like walking to the sink to get a drink of water made me wonder if this baby would ever be able to accomplish something so simple. Are we thinking about bringing a child in to this world who will suffer mightily? Physically and emotionally? How is that fair?” 

Before the ultrasound that changed everything, Angela and Tim couldn’t help but fantasize about their third child and what he or she would be like.  For a parent who has high hopes and dreams for their child, a diagnosis like this comes as a severe blow.  It is often difficult to imagine what your life will be like trying to accommodate for therapy appointments and special procedures and surgeries on your infant.  There are worries about how much specialty care will cost and how your child will be seen by other people – pitied or teased, not to mention whether their days will be spent in pain and frustration.

It was during those two weeks of waiting that Angela and her husband decided to join their church congregation in sponsoring international missionary work.  They ‘adopted’ a family of missionaries in South America by praying for their safety as they spread their religious message.  One evening the church and its congregants hosted a potluck for some of the missionaries.  Angela and her husband found themselves wandering the room, loaded plates in their hands, looking for a place to sit.  Tim spotted an opening near another couple and they settled in and began making small talk.  As the two families became acquainted, the missionaries explained that they were the parents of an eighteen-year-old son with spina bifida who had come to the United States to attend college. As soon as he was settled in, the couple would head to South America to resume their work.

 “This was a sign. It was no accident that we sat next to them.  I wasn’t even surprised later when I discovered that this family was the one we were sponsoring.  I knew that this was what God wanted me to know. I had to continue this pregnancy no matter what. Regardless of the amniocentesis results. “

Their decision was made.  Tim and Angela both recognized these events as a message that they were meant to raise this baby. No matter what.

Angela set out to learn as much as she could about raising a child afflicted with this disease.  She read books, interviewed the family they sat with at the potluck, searched the Internet and talked to every doctor she could in order to prepare herself and their family.

 “We are so lucky. My family lives close by and was willing to help us. We have terrific friends and our church asked how they could help.  They brought meals for four months after Savannah was born. People watched our boys for us when we were in the hospital and surrounded us with love.”

Angela had a scheduled C-section and Savannah was immediately whisked away to the University Hospital to close the defect in her spinal cord.

 “I held her for a second and then she was gone. On day two, I really got to see her for the first time. It was like Christmas morning. I had a nervous stomach and started crying uncontrollably. I wasn’t able to hold her because of her back surgery but I got to rub her hand and talk to her.”

On the third day of her life, Savannah had a shunt placed in her spine.  She had a second one placed at the age of three months, but when it began irritating her spinal cord three months later, she underwent yet another surgery.

During the first year of their daughter’s life, going to the hospital became a regular occurrence for Angela and Tim.  Savannah had difficulty with her digestive tract and didn’t sleep much.  Angela was exhausted and fearful but her faith in God and the support of her friends and family helped keep her strong.

Today, Savannah is eight years old and remarkably high-functioning for a child with spina bifida.  She is lucky that her spinal lesion was low on her back and her family has not identified any mental disabilities as a result of it.  She is not confined to a wheelchair and, while she is forced to use a catheter every four hours and undergo bowel cleansing procedures at home every day and a half, Angela credits her faith and the support of her community for helping them to manage the day-to-day challenges they face.

 “I know that we aren’t out of the woods. There is a possibility that she could encounter future difficulties, so we just live one day at a time.  I am so pleased that we made the decision we did. She brings so much joy to our lives. She is a happy kid and loves the simple things in life. I would love for other mothers to meet her if they find themselves having to make this decision. I wouldn’t trade Savannah for anything. This has been one journey I would choose again.”

Despite the innumerable infections, kidney stones, and need to educate every person who touches their daughter’s life, Angela and her husband are at peace with their decision.  They are present, concerned parents who worked hard to prepare themselves and their boys for the challenges ahead and surrounded themselves with people whose help would be integral to their success.

The two weeks in which this couple agonized over what lay ahead for their unborn baby were exceptional in that they opened their eyes to a world they wouldn’t have thought possible.  Their strong convictions on the issue of abortion were rock-solid until they were faced with deciding how to deal with this issue in their own lives. While Angela doesn’t believe either one of them ever truly would have opted for abortion, the fact that they were put in the position of actually contemplating it, no matter how briefly, was something neither of them could have imagined.

They have both voiced compassion and understanding for families struggling with this decision and believe that their own experience led to a re-examination of their previously held position on abortion.

“I don’t know that I would say either of us has made a complete 180 degree turn in our thinking, but we won’t be marching in any pro-life rallies and our hearts go out to anyone who ever finds themselves faced with this decision.”