4

VICTORY AGAINST THE ODDS

MY VISITS TO THE SPECIALIST should have produced high anxiety, and in the beginning they did. But as the weeks passed, Jase and I, along with our family and friends, continued to pray that even though the odds were stacked against our baby, he or she would not be adversely affected by the Rh incompatibility. We were greatly encouraged when the numbers in the blood work did not rise as the doctors expected, and I thought, Wow, our prayers are really working. These levels are staying down.

When I asked Dr. Davis what she thought about the low levels, she said, “There’s no explanation for this, Missy, except one: The baby must have negative blood.”

I could hardly speak.

I admit that though our family and others were praying for this unlikely outcome, I did not really expect it to happen. An important lesson I had heard all of my life became deeply personal that day: God hears and answers prayer. He does not need good odds. He can make the impossible possible and bring a victory when the chances seem insurmountable.

After a few weeks, all of my doctors concluded our baby must definitely have a negative blood type. That was the only medical reason for the stability of the blood levels. Dr. Davis discontinued my visits to the specialist and began treating me as she would treat any other expectant mother. She was attentive to the potential complication, but it was no longer a major issue. Jase and I were so relieved!

At twenty weeks, with the uncertainty and trauma of the past five months finally behind us, we were so excited about the ultrasound that would reveal our baby’s gender. When we found out we were having a baby girl, we were elated. I finally felt free to reconnect with the dreams I once had of being able to dress my daughter in beautiful clothes, give her dolls, and decorate a sweet, feminine bedroom for her. I could hardly wait.

Another Look

For the next several weeks, we relaxed and began the exciting task of coming up with possible names for our daughter. With the boys old enough to contribute their own suggestions, we had all kinds of names being thrown at us, some good, some not-so-good. One day, Cole told me he liked the name Mia.

“Where did you hear that name, Cole?” I asked my five-year-old.

“I don’t remember,” he said, “but I think it’s pretty.”

I personally was leaning toward the name Sophie. Jase liked both suggestions but couldn’t make a final decision on either one. Jase had excused himself from introducing potential baby names because of the ridicule he had received after trying to name Reed “Cypress Creek.”

A few days later, I took Reed and Cole to McDonald’s before going to a movie. While we were at McDonald’s, I heard a mom trying to get a child’s attention in the playground, calling her Sophie. Aw, that’s the name I like. A little while later at the movie theater, a child hollered to another child, “Sophie, wait up!” That was the decision-making factor for me. The name Sophie was out of the question. I wanted a name that was different from most children (like I thought I was getting with Cole), and the day’s events were a clear sign for me.

When I got home that day, I announced to Jase and the boys that our baby girl was going to be named Mia. Later, when I mentioned the name to Lisa, she thought it was appropriate—Mia would now be an acronym for “Made in Arkansas!” We also decided to keep the tradition of the middle name being from a family member and chose my mom’s middle name, Elaine.

With the burden of the Rh complications lifted, we began to prepare for Mia’s arrival with light hearts and great enthusiasm. We even took a trip to the beach and had a wonderful time. Even now I flip through the photographs from that vacation and realize how much I still treasure the looks of happiness on all our faces.

The week after we returned from our beach getaway, at thirty-one weeks gestation, I was scheduled for another ultrasound, one using a remarkable new four-dimensional (4-D) technology that would give us an amazingly detailed look at Mia. I was excited about getting to see our daughter’s tiny features up close. After so many anxious ultrasounds during my visits to the specialist, being able to have one without any concern was a welcome relief.

Since Jase had been with me for the twenty-week scan when we found out we were having a girl, he decided to forgo it this time and let others join in the excitement. I thought this ultrasound would be an easy, fun opportunity to give the boys a glimpse of their new sister, and while Jase would be missed, he could watch the video that night at home. Miss Kay, Lisa, and Jessica all wanted to see our baby girl, too, so they went with the boys and me to the clinic that day.

The ultrasound room was abuzz with happy anticipation as the technician, a former coworker of mine, prepared for the scan. Miss Kay described it as “a completely joyous time.” As the image of Mia’s face became clear on the screen, we were ooh-ing and aah-ing and commenting on how cute her little cheeks were. Then the adults in the room grew quiet. The technician ran the ultrasound wand over the same spot several times, trying unsuccessfully to conceal her growing concern.

“Does her nose look smushed to you?” I asked, already knowing in my heart that it did not look normal and that something was wrong.

She simply said, “I need to get the doctor.”

My eyes filled with tears.

The instant Miss Kay perceived there was a problem, she sprang into action, and she and Jessica herded the boys out of the room. I do not remember what she said to them, perhaps something she knew they would not resist, such as “Let’s go get something to eat!” I knew they were in good hands.

Over the next several minutes, the technician returned with Dr. Davis and was busy trying to capture as many photos and as much video of the baby’s facial features as possible. Lisa called Jase, who immediately began heading to the hospital. Dr. Davis viewed the ultrasound and confirmed my worst fears—something, indeed, was wrong. She referred to the baby’s condition as a cleft lip. Even with advanced technology, the scan could not reveal whether or not the palate was also cleft.

Dr. Davis wanted to meet with Jase and me as soon as he arrived at the clinic. Lisa stayed with me in a waiting room where Jase was going to meet us. I was so uncomfortable. A public waiting room was the last place I wanted to be after receiving bad news, but I tried to be as strong as possible.

When Jase found us and we began to talk about this new development, he tried to encourage me by saying, “We’ll just have to teach her that beauty is on the inside.”

I was furious over that comment, but I did not respond because I was trying my best to keep from breaking down. His intentions were good, but his timing stank! I had just received the news about our baby’s cleft lip thirty minutes earlier and was still in denial, hoping the situation would somehow change. I had not yet accepted it, and Jase’s words indicated to me that he had bought into it completely. The first thing I wanted to do was pray that the baby would be healed in the womb, and I felt Jase’s comment completely ignored that possibility.

His words made me livid that day, but since then, they have been a source of strength and a lifeline for me in many different situations we have been through with Mia. I hated them when he said them; I cherish them now.

What Exactly Are We Dealing With?

During the twelve years I had worked at the ob-gyn clinic, I had only heard of one other cleft-lip situation and knew almost nothing about a cleft palate. Over the following weeks, I would learn more than I ever dreamed I could know, much of it very daunting.

When I scanned the Mayo Clinic’s website, I found a very simple definition of cleft lip and palate: “Cleft lip and cleft palate are openings or splits in the upper lip, the roof of the mouth (palate) or both. Cleft lip and cleft palate result when developing facial structures in an unborn baby don’t close completely.”[2] As I looked at other websites such as WebMD, I began to comprehend the significant differences between cleft lip and cleft palate.[3] The more I read, the more I realized that a cleft lip is a medical situation that must be addressed, but a cleft palate is a far more serious condition.

I have always been the type of person who deals best with difficulty by getting busy. When something highly emotional or intensely demanding hits my life, I take a basic approach: Give me a week to get my mind around this, then get out of my way.

The first obstacle we had to clear was to inform our family and friends of the baby’s condition. That was extremely difficult for me. To know the truth in my heart and mind was one thing. To voice it aloud to those around me was heart wrenching. Thankfully, Miss Kay is good about spreading news, especially a situation that needs prayer. Not only does she pray; she is an expert at enlisting other people to pray too. Knowing she would make sure the right people found out what they needed to know took tremendous pressure off of me.

By the end of the first week after the 4-D ultrasound, I had begun to process what Jase and I were dealing with. I had done as much grieving as I could do at that point, and I was ready to get to work. As a task-oriented person, gathering information, looking for options, and identifying possible solutions for Mia would help me more than anything else. So those were the things I wanted to do.

In addition to researching cleft lip and palate, I found a tremendous resource in Jase’s cousin Melissa. She is his first cousin on his father’s side, and I had gotten to know her well when she lived with us for two years while finishing college. She helped us tremendously during the time I was pregnant with Cole and after he was born. As soon as Melissa heard about our baby’s diagnosis, she called me and said, “Here’s what we need to do.”

Several years earlier, Melissa had earned her degree in speech therapy. I had no idea how valuable her training would be until she began to explain the speech challenges faced by children with cleft lip and palate. Until then, I had focused almost exclusively on the physical aspects of the condition.

Knowing we would need extensive medical services, Melissa contacted a large medical center in south Louisiana, not too far from our home. When the staff member never returned her call, Melissa secured an appointment for us at another medical center in Arkansas, this one specializing in the care of children. We met with an ear, nose, and throat doctor for almost an hour. She was very informative, and I grew more and more comfortable with her as the conversation progressed. She was definitely well versed in the field of cleft lips and palates, and I had almost decided that this is where we were going to bring our baby.

Then I asked, “Will you be doing the surgeries?”

“I’ll be in the room,” she said.

I was confused. “Then who will be operating?”

“Well, this is a teaching hospital. Students will be doing the operation.”

I looked at Melissa, whose jaw was open and whose eyes were like saucers, and said, “Not on my baby.”

We quickly stood up, thanked the doctor for her time, and left. By this time, I was thirty-four weeks along, and Dr. Davis had told me I could no longer travel. Completely discouraged and becoming more and more stressed without a plan to help my daughter, I felt helpless.

* * *

The following Sunday morning Jase’s brother Alan, who was a minister at our church at that time, began his sermon by informing the congregation about our situation. He gave them enough basic information so they would have an understanding of what we were facing and asked everyone to be in prayer for our baby and our family. We knew he had planned to address the church on our behalf, but we were not prepared for how difficult it would be for us, sitting there and listening to someone else talk about what we were going through. We felt that all the eyes in the room were on us. Of course, their eyes were filled with kindness and support, being our family and friends, but we simply were not accustomed to having our lives on display. The focus on us felt warm and loving, yet totally new and a bit uncomfortable at the same time.

We were grateful for the prayers and well wishes from our church family, but we were also aware that we had a long and perhaps grueling journey ahead of us. Before we left the building that Sunday, a woman we had known for years approached us and said, “I have a client whose grandson was born with this condition a few months ago. May I give her your phone number?”

“Yes! Please do!” we replied, happy and relieved by the possibility of connecting with another family who had already walked the path we were set to travel. Better yet, the family did not live far from us. We had been discouraged that week because of the dead ends we encountered at two major hospitals, so we were desperate to speak to someone—anyone—who had experience with cleft situations.

A Godsend

Our friend at church did contact the family she knew, and the mother of the baby, Amy Stegall, called me that night. The tone in her voice was not at all what I expected. She was not sad, discouraged, or frustrated. Her voice had a ring of joy to it, and everything she said to me was encouraging. I could tell immediately that Amy was a go-getter and a problem solver, a kindred spirit for me. I listened, more hopeful than ever, as she said, “We have found the best place on earth for our baby. I would love for you to meet our son, and then I can tell you more about his doctors.”

We made plans for Amy and her six-month-old son, Bolton, to visit me at home later that week. As I hung up the phone, I felt better about our situation than I had ever felt. I hoped and believed Amy had the answers and resources our family needed.

Several days later, Amy and precious little Bolton showed up on our doorstep. I was thrilled to see them. Bolton had been through one surgery at that point and was preparing for another procedure fairly soon. Amy gave me mounds of information that day, the most important piece of which was the name of the International Craniofacial Institute (ICI) in Dallas, Texas, and the renowned surgeon based there, Dr. Kenneth Salyer. At that time, Dr. Salyer had recently gained global attention when he surgically separated a set of former conjoined twins from Egypt.

Amy also shared with me the detailed process she and her husband undertook to identify ICI as the best place for Bolton’s care and Dr. Salyer as the best surgeon for him. Amy’s husband had researched many physicians and surgeons on the Internet and finally narrowed their choices to two by asking one important question: Which doctors have been published on the subject of cleft lip and palate?

Ultimately, they chose Dr. Salyer. Once I heard about how thorough their research was and how happy they were with the entire team at ICI, I knew I needed to contact the Institute. I had only one question for Amy: “Will they take us? It sounds like this Dr. Salyer is kind of big time.”

She could not answer that, of course, but she did give me his e-mail address and encouraged me to write to him directly. But he’s famous, I thought. Will he even look at an e-mail from me?

I couldn’t let my moment of self-doubt keep me from seeking the best possible care for our baby, so I quickly sent a message to Dr. Salyer. I explained to him that an ultrasound of our baby had revealed a cleft lip, but we did not know whether or not the palate was involved. At the time, everything was so new to me that I spelled palate the same way we spelled it for the wooden platforms we used at Duck Commander—pallet. After briefly explaining our baby’s condition to the doctor, I asked, “What will it take for you to be willing to take our baby as a patient?”

I was thrilled when he replied to my message the next day with the instruction to contact his new patient coordinator, Sue, giving me the phone number where I could reach her. I called her right away.

“What do we do?” I asked.

“Just call us as soon as the baby is born,” she said. “We will make an appointment to see you when she is about a week old. You don’t need to do anything else before the baby comes.”

What did she say? Do nothing? This was extremely difficult for me; I had an innate need to work on fixing our dilemma, but I had no choice. I followed Sue’s orders. In the meantime, I asked Melissa to do some research on Dr. Salyer since she was determined we should seek a physician who considered a child’s speech development just as important—or even more so—as that child’s outward appearance. She was pleased with what she found.

A visit to the Institute before Mia came was not possible. I was a bit nervous about moving forward with them without seeing the facility or meeting any of the staff. Sue had also told me during the phone call that the Institute would not take our insurance, meaning that instead of an 80 percent–20 percent coverage, we could expect only 60 percent–40 percent coverage. Despite that major setback, I believed in my heart that God had led us there through the Stegalls, so in faith, I told Sue that we would call her as soon as possible after the delivery.

More Important than Money

Knowing the International Craniofacial Institute did not take the type of insurance Jase and I had was a source of anxiety for us, to say the least. As a budget-oriented couple who never believed in living beyond our means, this additional layer of stress made our situation even more difficult than it already was for us. We had no credit card debt because we were the kind of people who never bought anything if we did not have the money for it. We did owe money on our house and our cars, but we made our payments in full and on time every month. Just the thought of the travel expenses alone of going back and forth to Dallas concerned me.

But we could not allow our lack of financial resources to determine our course of action. We could not wait and hope the situation would get better on its own somehow; we had to seek medical care. We prayed about what to do for our daughter, and once we realized ICI was the best option for her, we knew it was our only option. So we decided we would do the very best we could for our daughter and trust God with the costs of her care. This was a tremendous step of faith for us because we were determined to pay the Institute whatever we owed them, no matter how much, and no matter how long it took.

We did not go into the situation hoping the Institute would write off any of our bill or trying to figure out how we could get a discount. From my experience working in a doctor’s office, I knew we could end up with a huge bill, but I also knew we could make payment arrangements with them and would do our best to pay it on time month after month. I knew the chances were high that Jase and I would still be sending one hundred dollars a month to Dallas when we were old and gray. If that happened, we would make our payments faithfully and be okay with doing so.

It wasn’t an easy decision for Jase. He immediately thought, It really doesn’t matter how many zeroes are behind the numbers on the bills. It will be a black hole for us no matter how much it is. It won’t take many doctors visits or surgeries to wipe us out. But then he focused on Mia, who needed our help. He concluded, “We will probably be in debt for the rest of our lives, but we are going to get our daughter the best care we can find. All that matters is making sure our little girl has the best possible chance for a happy, healthy life.”

Finding the words to tell Reed and Cole what to expect when their little sister was born was another harrowing task. What exactly will an eight-year-old and a five-year-old understand about this situation? I wondered. Will they be scared? How much will this affect their lives? All these questions swirled in my mind on a daily basis, and I dreaded this conversation with them.

Finally, I sat both of them down and told them that their sister was going to be born different from other babies, that she would look different because her face did not grow together in my tummy like theirs did. I took them to the computer and showed them before-and-after photos of some of Dr. Salyer’s patients, which were on his website. They looked at each one with curious eyes but didn’t react the way I expected. There were even a few “aww”s and an “Oh, he’s so cute.” Wow, what hope and encouragement those two little boys gave me that day! They saw right past the imperfection and into the spirit of each of those babies. After we looked at the pictures, they ran right back into their playroom and continued playing.

One More Day

Mia was due near the end of September 2003. When I went to Dr. Davis for a regular obstetrics check on September 11, my blood pressure was extremely high and I was unusually swollen.

“You’re down to the last three weeks,” Dr. Davis said, “and your blood pressure is too high. We need to take this baby.”

I panicked. I told Dr. Davis that my dad was preaching for a week out of state, far enough away that it would take hours for my parents to get back to West Monroe, possibly not until the following day. With my dad scheduled to preach every night, I knew he would not be able to leave, but I also knew my mom would do everything in her power to get to me. With everything we had already been through with this baby and everything we anticipated facing in the weeks and years to come, I really wanted her to be there for the birth. In addition, I did not want to have the baby on 9/11, as the terrorist attacks on the United States had happened only two years earlier and the heart of our nation was still raw and broken over that date.

“Okay,” said Dr. Davis. “Call your mom and tell her to get here as quickly as possible. Then go home and get in bed. Do not get up except to go to the bathroom. If you feel bad or strange in any way, call me immediately.”

I was very grateful that Dr. Davis was willing to wait a day to deliver the baby. She scheduled the C-section for September 12 at 11:30 a.m. That was all I needed for now—one day for my mom to get home and for the date on the calendar to change.