Haley Faith Willis

Story and Testimony of Jeff and Lynel Willis
In the birth of Haley Faith Willis

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Jeff and I met in Kansas City, MO in August of 1999 where we were attending Midwestern Baptist Theological Seminary. We married 9 months later in May of 2000 and Jeff continued studying for a Masters degree in church music while I worked at the seminary library.

It wasn’t until February of 2002 that we found out we were expecting our first child and were of course overjoyed at the thought of having a baby. Things took a different turn for us, though, as eight weeks later on April 28PthP I miscarried. It was at that time we thought nothing could possibly be worse than losing a little one in such a way and we struggled through that time, but all the while hoping that the Lord would bless us with a baby. In the few months following, Jeff and I found out from our doctor that we would not be able to get pregnant on our own. He had told us that if and when we were ready to get pregnant, that we would have to take “5 little pills” to do the trick—but with a risk of multiple births. We continued to pray for a baby and Jeff and I remained content to wait to see what God would do—and sure enough, in early November 2002 we were delighted in discovering that we were expecting our second baby and we would be due in July 2003.

As we passed the fourth month, we breathed a sigh of relief that the risk of miscarrying was no longer a threat and we looked forward with great expectation of the joy of being pregnant and all the experiences that go with it. On February 11, 2003, my 19PthP week of pregnancy, Jeff and I brought our videotape with us to tape our first viewing of our baby by sonogram. We were so excited to see the hands and feet moving, seeing the fingers and toes, (Jeff was especially relieved to see fingers since he was born with only his pinkys and thumbs on both hands) and the sonogram nurse chatted with us good-naturedly and as we looked at the baby’s body, everything seemed fine. It wasn’t until we got a view of our baby’s head that our nurse suddenly became very quiet. We figured she was concentrating on the image since she was taking circumference measurements to see the gestational age. But, after a prolonged period of time of being silent, we gradually became alarmed at the nurse’s body language…she saw something wrong, but could not diagnose or let us know what she had seen—it was up to the doctor to tell us.

We were sent to a nearby room to wait for my doctor to complete our exam. We finally knew what people had talked about when they were waiting with dread for results of a test—possibly for cancer or a terminal illness—and we were waiting to hear the news of our baby. Jeff and I kept thinking, “surely nothing could be wrong this time since we’ve already lost a baby last year…surely God knows that we’ve been patient and that we could not bear it if something was terribly wrong again.” As all kinds of thoughts flooded us, my doctor came in with a look of disappointment on his face and placed a hand on my knee and looked at me with the words “the sonogram was not good—there is something wrong with your baby.” Our hearts were completely broken as we listened to his words explaining that from the sonogram he and another doctor and nurse all saw that the baby’s head did not close completely and that a large sac was growing out the back of the head where there was brain matter inside. Our baby was diagnosed as having a posterior encephalocele, which means a sac growing behind the head as a result of the failure of the head closing, in which as the brain grows, parts of the brain if not all of it, can grow outside the baby’s head into the sac.

Since this type of diagnosis is inoperable both inside the womb or to correct it after birth, my doctor explained all our “options” in which we could “interrupt” the pregnancy (abortion) or we could continue carrying the baby. If we continued carrying the baby, we were told that we could go into premature labor, or the baby may die in the womb before birth, that the baby would not survive labor or that if it did survive labor and delivery, it would surely die soon after birth within minutes to hours. We knew what our answer was going to be—both Jeff and I knew we would carry this baby no matter what. After all, we had just seen the sonogram and watched our little one moving and living—we couldn’t end or terminate something that we knew was given to us—no matter how painful this was going to be. After making our decision to continue to carry, I was whisked away back into the sonogram room to undergo an amniocentesis to see if this was a chromosomal defect and to see what the sex of the baby would be.

Two weeks later we found out that there were no chromosomal abnormalities and that we were having a baby girl. We knew without a doubt that the Lord had simply made her exactly the way He meant for her to be and we began the journey of faith that the Lord would take care of us and this baby and would give us the strength to get through the next few months. We began to pray and knew this was much bigger than we were—so we set up an email prayer chain and the word began to spread about our situation. Never did we realize later how many lives our baby girl would touch and the prayers that would pour out of people’s hearts for her.

We decided to go ahead and name our baby girl and so we gave her the name Haley Faith. She continued to grow and her heartbeat was normal, though with each sonogram, we could see her body growth beginning to slow down and her head was getting smaller as the sac continued to grow with more brain tissue also growing within the sac. Every doctor’s appointment we heard the same news over and over that she would not survive and should be realistic about arrangements for her passing.

Throughout the last months Jeff and I felt robbed of a lot of the joy that comes with pregnancy— Lamaze classes, registering for baby gifts, the baby showers and the joyful pregnancy conversations with people. Instead, we talked of her condition, funeral arrangements or memorial services, and how to memorialize Haley in a special way. We still remained hopeful that Haley would be our miracle baby—that she would survive and we could bring her home. I began to pray in my heart for the special things that I would like when I give birth to her—like praying that I would be able to see her alive and look into her face and her eyes and hear her cry and the snuggle sounds and to be able to nurse her. Jeff hoped for some of the same things and also that she might grasp his finger. Ultimately, we wanted her to know we loved her and gave her every chance possible to survive.

Our ninth month arrived and I was still going strong in our pregnancy. Our weekly email updates had spread to thousands of people by now all over the U.S. and around the world and we were receiving cards, gifts and emails from people we had never met that were praying for Haley. My doctor had given up on giving any kind of guesses as to how Haley would arrive—I think he was as amazed as we were that she had survived this long, and yet, it wasn’t so surprising since she was living off of my body. The question was how and if she would survive on her own and what parts of her brain would be intact. During my ninth month, I made a phone call to “Alexandra’s House” a special organization that helps families deal with special babies like ours and deal with the defects, illness or the passing of their little ones.

It was through this organization we were placed in contact with a specialist from Children’s Mercy Hospital who stepped into our lives to help us understand Haley’s condition and would help us with the care she might need. He said it the best of any of my doctors: “Haley has a special time-line and we need to help her live the life that she’s been created to live.” But, like every doctor we had spoken with, he could only guess as to what her condition would be—we were all waiting with great expectation of her birth to see really what we were dealing with.

The decision was made to induce labor July 8PthP, 2003—right on my due date. The labor and delivery was fortunately a fairly easy one and Haley arrived very quickly at exactly 1:00pm July 9, 2003 weighing 6 lbs 6 oz. and 18” long. She survived the labor and as they laid her on my chest, we heard her cry and it was music to our ears. She reached out for Jeff’s finger and grasped it firmly and opened her eyes and looked up at us. It was more amazing than we had ever expected. It was painful to look at the back of her head and see the sac. It had ruptured on arrival and we knew that our time was precious since they would need to bandage the area and get her to Children’s Mercy Hospital as soon as possible to begin antibiotics in case infection would set in. We got to be with her for about 4-5 hours and in that time all our family was able to hold her and she was given back to me where she was able to nurse for the first time. As she was whisked away by the transport team to CMH, Jeff and I had a special peace that even if we never saw her alive from that day on, we were thankful the Lord had answered all our prayers for that day and had given us our heart’s desires.

She went through surgery the next day to remove the sac and all throughout our time talking with the doctors and specialists and neurosurgeons—all were not certain what to guess for the future for Haley. They all are watching and learning—just like we are, but doubt she will live very long.

Haley continues to live today! She came home just 3 days after her surgery and began gaining weight and growing in length and showing signs of a normal newborn. She has all her reflexes, she can hear and see and shows signs of purposeful movement. The future is still uncertain and the doctors are still in awe as we are—but one thing is for certain, we have our miracle baby and are grateful for each day we have her. She is a gift from the Lord to bring honor and glory to Him alone and she is simply “on loan” to us until He calls her “home” and gives her a new body—and in the meantime it is an honor to care for our little Haley Faith.