“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them” (Psalm 139:13-16, ESV).
Summer 1998. I’ve had plenty of time to consider and sort through all of that season’s events. Fourteen years later, I can talk about these things without the raw pain and anguish I felt back then. Time has put everything in perspective for me. That week in August 1998 marked just the beginning of an unraveling for me—an unraveling that has profoundly affected my life and changed the way I live.
The relationships that suffered as a result of those events long ago, I have covered with the same grace and forgiveness that was bestowed upon me by my Father in heaven. This didn’t happen overnight. In fact, it took many years of being in the fiery furnace before my heart would find healing. I don’t live in the past. However, I believe to free ourselves for a brighter, more hopeful future, we need to come to terms with it. Only by the grace of the Lord Jesus Christ have I been able to embrace the past with peace in my heart–the peace of God that transcends all understanding.
Even as Christians, life is full of hardships and difficulties. In 1998, I was faced with circumstances that would challenge everything I believed in and was taught as a child—bringing up paralyzing fears and a desperation that could only be overcome by utter brokenness of spirit before God.
I learned some valuable lessons in the years past. One of which is, as Christian artist, Nicole C. Mullen puts it, “That the ‘not so good old days’ can either make you weak or make you brave, they can make you bitter or make you better. But that choice is up to us…”
We were living in Honolulu in September 1997. By spring 1998 we were expecting our second child. Bailey was only a year and a half. Greg was piloting submarines again with Voyager Submarines. I was five months pregnant.
The first few months of the pregnancy were blissfully uneventful. I was enjoying the feeling of a baby growing inside me, sensitive to the changes in my body once again. Even Bailey, young as he was, was caught up in the joy of our growing family as I invited him multiple times a day to pat my belly and rest his head on my growing bump.
All was well until my Triple-mark screen came back abnormal. The doctor said there was really nothing to worry about at this point since it was just a screen. Abnormal results were not all that uncommon. Still, he offered me an amniocentesis, to which I said yes, to assuage any doubts I had at the time. I was due for a routine ultrasound as well. Relatively confident, I went in for both procedures.
The call that would change our lives forever came a week later at the end of July. My doctor had great news! The amnio showed no evidence of Down’s syndrome or Trisomy 18. Everything was good to go and baby appeared to be healthy. Any concerns I had evaporated at that moment. I had peace. Then he asked if the doctor who had performed the ultrasound told us the sex of the baby. I said, “Yes! We’re having a girl!” I was thrilled and Greg was beside himself because he was going to have a daughter. There was a moment of hesitation on the other end of the line and doctor asked me to repeat myself. I did. I heard rustling papers and after a long pause he said the chromosomes from the amnio came back XY—a boy. I knew that ultrasounds weren’t always reliable when sexing a baby and that doctors do sometimes make mistakes interpreting the images. But when doctor said what he did, I felt something inside me let loose—probably my heart falling into the pit of my stomach. I knew then that something was very, very wrong. The peace I had two minutes earlier vanished as quickly as it had come.
What followed in the next few days and over the course of two weeks set my life down roads I never expected to travel in my lifetime. We went through a series of intense tests, more ultrasounds and amnios, and emotionally grueling sessions with genetic counselors. In a matter of days, we had assembled the best team of doctors and pediatric geneticists in all of the Pacific Rim. They were the best in their fields. As test result after test result came back, they found more things wrong with baby. And the more symptoms that showed up, the less the doctors knew what was happening. In addition to the discrepancy between the anatomical sex and chromosomal sex, baby showed heart and lung abnormalities, polydactyly, palate issues, and so much more. Doctors were baffled. In the end, the final diagnosis was severe Smith-Lemly-Opitz Syndrome (SLO). SLO is a rare genetic condition in which the body’s ability to produce cholesterol is compromised. In the total absence of cholesterol, as was in our case, body systems cannot function, never mind develop. Hence, the sexing discrepancy, for example—development of the male features simply ceased.
In 1998, very little was known about SLO. The gene responsible had only been identified in 1993. At the time of our diagnosis, there were less than 20 reported cases in the United States. SLO is an autosomal-recessive condition—meaning Greg and I are both carriers. So suddenly, each child we have has a 1 in 4 chance of being born with SLO. This last bit of information took us aback as this was our second child and Bailey was born healthy and strong.
The prognosis for our SLO baby was not good. Most babies born with severe SLO, if they make it to term, die shortly after birth. We were told that when babies do survive, they are dependent on 24-hour medical care with little or no chance of life outside of a hospital setting.
Given the severity of our case, doctors presented us with options. We were told there was little the doctors could do and that there was no cure for the disease (research and development over the last decade has improved the prognosis and treatment of the disease but, to date, there is still no cure). And that, if baby did survive, there was the question of the quality of life—or the virtually guaranteed lack of it. They laid it out for us like this: we could 1) try to carry the pregnancy to term with no guarantee that we would even make it to 40 weeks and with little expectation that baby would survive long after birth or, 2) we could “interrupt pregnancy” which basically translated into the official term for “abortion with just medical cause.” We were told that if there was such a thing as “just medical cause” to validate the termination of a life, our case was it. From their professional perspectives, termination was a viable and acceptable option. They tried to reassure us that no one would condemn or judge us if we chose this path.
Greg and I were numb—at a loss and didn’t know what to do. The doctors informed us that if we decided to interrupt pregnancy, we were faced with the added urgency of legal time pressures. In the late 90s, there were only 2 or 3 states that would legally perform late-term procedures beyond 24 weeks. Hawaii’s cut-off was 22. By now, we were 21 weeks along.
I remember the final meeting with all five doctors and our genetic counselor. They sat in a circle of chairs, Greg and I on a blue leather sofa. No table between us to rest the files and charts we’d amassed. No table to hide the uneasiness of nervous legs and sweaty palms. I posed a question to all the doctors, knowing that none would answer. “What would you do if you were in our position?” As expected, the room remained silent. No one answered. Even if they wanted to, the fundamentals they learned in their medical ethics classes told them they could not. When the quality of life issue came up, I looked Dr. Hsia—our primary pediatric geneticist who was retiring within days—square in the eyes to question him without words. In the calmest, gentlest voice he whispered, “There is none.” And with the slightest nod of his head, together with a fixed gaze, he tried to assure me termination was an acceptable option. Those few seconds of wordless exchange are burned in my memory forever. I felt sick to my stomach. I felt exposed and fragile, teetering on the edge of an abyss with the black bottom nowhere in sight.
There was nothing left to say. The doctors told us to take the weekend to think about it before giving a final decision on Monday. They left us alone in the stark white room. And as the door closed behind them, I lost control of all senses. I cried gut-wrenching wails that were almost primeval—exhausting every muscle and every tear in my body as my arms and legs flailed about in mad directions. I was sure the entire hospital could hear me, but I didn’t care. Despite Greg’s efforts, I was utterly inconsolable. MY world closed around me. I was ALONE in that room with nothing but raw emotion pouring out of my veins.
We left the doctor’s office that day knowing what we were inclined to do—interrupt the pregnancy as they had said. Still, this didn’t sit right with my soul and I was desperate for someone to throw me a life-line that would give me permission to see the pregnancy through as far as God would allow. I wanted someone to tell me straight out that to end the pregnancy was wrong and contrary to what God says in His Word. I wanted someone to say, “Don’t do it, Lynette, it’s not right.” In the end, that life-line never came. Not one person ever said those words to me or Greg. Not one. For a long time, I never understood why. But, in truth, that’s all it would’ve taken for us to have made a different decision.
Greg and I had been searching for a home church at that time but still hadn’t found a place to settle in so we didn’t have a pastor who knew us or a church family to offer support and encouragement. Though we were both brought up Christian, in 1998, we were in effect, ignorant of what that really meant. For years we had both been living lives that wandered far from God. Not conscious of it at the time, that August, we stood at the beginning of a faith journey that would forever change our lives.
When it became evident that no one was going to tell me what I so desperately wanted to hear that weekend, Greg and I proceeded to methodically process what lay ahead. I remember having a picnic lunch in Moana Lua Gardens. We spread our blanket out, read through all the literature the doctors had given us which included a bereavement booklet filled with testimonies of other couples who had faced the same dilemma. As Bailey played, we sat there and went through the checklist. Do we name the baby? If so, what do we name him? Do we have a full funeral service or a memorial service? Do we invite people/family or not? What do we want to do with his body? Bury or donate to science? It was surreal planning and preparing for the death of a baby that was still inside my belly.
I suppose I should clarify that because I was very well into my second trimester, the only feasible way to interrupt the pregnancy was to induce early labor, which they did. I very much went through the pains of labor and delivery for this child—something I believe not many (not even family) really understand. Family didn’t fly out to be with us. And, because it was so emotional for everyone, I believe over the distance and in their absence, family seemed to sterilize it down to a medical procedure. For us, it was very different. We had a baby to hold, a baby to take pictures of, and a baby who was very real in every possible way. A baby to love, even still.
The weekend passed and Greg left on Monday morning to start a new UXO job in Maui. Yes, all this in the middle of a career change for Greg and he had no option but to leave as scheduled. I was to be induced on Wednesday morning at which time my doctors would call Greg’s company and request that he fly back to Honolulu on an emergency flight that evening.
We had a housemate at the time. Her name was Susan. She was my closest friend and like a sister to me. Susan was also a Submarine Pilot with us at Atlantis five years earlier. When we moved back to Hawaii in 1997 she coordinated everything for us and we agreed to live together to minimize the high cost of island living. Still, as close as we all were, Greg and I had agreed that no one outside of our immediate families would know that we had made a choice in the matter. Not even Susan. To her and all our other friends and extended family, baby was simply sick and we “lost” the child.
Susan took me to the doctor that Wednesday morning under the pretense that I was going in for yet another amnio and nothing more. I went through some final diagnostic tests and did do the amnio, from which the final diagnosis was confirmed a week later. What Susan didn’t know was that the doctor had also started the induction process by inserting Laminaria to begin to dilate the cervix. I was to be admitted into the hospital the following morning in preparation for labor and delivery. Susan picked up Greg at Honolulu International that evening.
By two o’clock Thursday afternoon, I had given birth to a stillborn baby—our second son, Jacob Gregory.
The tears were many and my heart has never been so heavy—before or since—that day, August 13, 1998. As crazy as it sounds, Greg and I were able to spend “time” with our baby, hold him and have photos taken. I suppose a part of me was afraid of what he might look like with his thin skin, extra digits and whatever else. But what I saw was a soft, beautiful baby, perfect in every way, six fingers and all. As difficult and painful as the past weeks had been, I had a peace in my heart knowing that he, “Jake”, was with the Lord. Greg and I had decided on a private memorial service with just us and the chaplain. The chaplain came to the room; we prayed, anointed Jake with oil and dedicated him to the Lord. She left us with the sea shell that held the oil and a white Testament. She prayed for us and encouraged us and told us that Bailey would be our “real chaplain” over the next few months. He was still a baby himself (one and a half) and would need all the love and attention as usual. He would require and demand there be some sense of normalcy in our lives when we left the hospital. Then she said, “This will either bring you closer together or drive you apart.” Something in her delivery made the last statement resonate in my ears.
Today, the photos we took at the hospital, the shell, Testament, the blanket Jake was wrapped in and other hospital memorabilia, are all in a memory box in a safe. With these things, are the cards and letters from family and friends, autopsy report and medical summaries. Our three boys know that they have a brother in heaven. As we celebrate each of their birthdays with birthday candles, so too, every year we light a candle that burns through the day and into the summer night on August 13th.
We donated Jake’s body to science—to the labs that helped us at Johns Hopkins and in Oregon to further SLO research. With two subsequent pregnancies, we continued to voluntarily donate amniotic fluid for more scientific study. Our case caused a stir in the medical community in 1998. Rightfully so, I suppose. We made medical history by being the first case ever to be diagnosed pre-nataly for SLO. We were the subject of many medical abstracts and papers in years that followed.
Jake was a planned pregnancy and we wanted more children of our own. Our doctors, however, recommended we have NO more children. We ignored the advice of our now legendary team of doctors in Hawaii. They were shocked and dismayed when I flew into Honolulu from Maui in late February 1999 to repeat the same pre-natal tests. By this time we were going to church regularly and had a lot of people praying for us and the baby. The results were negative for SLO and the doctors sent us away with a firm slap on the hand, reiterating that we should not have any more children. They said, “You got ‘lucky’ this time.” By the time I showed up again in September 2000, they were utterly stunned. Again, baby was negative for SLO. Both times, we knew in our hearts that if either of the babies tested positive for SLO we wouldn’t make the same decision we made previously. Knowing that, gave us a peace about trying to expand our family. So we did.
The birth and death of Jake pulled the thread that marked just the beginning of an unraveling…
Greg and I struggled deeply with having to make a decision to terminate the pregnancy or not. And when we made the decision I was adamant that no one outside our immediate family would know that we did. I made Greg promise me that he wouldn’t tell a soul. My desperate attempt and desire to keep it private and sealed behind a steel wall was a reflection of my own fear, shame, judgment and self-condemnation, and a deep knowing that to choose death for our baby was wrong—but still, we decided to do it. My soul was tortured by that decision and I was just barely able to cope. In the end, Greg was unable to keep his promise to me and in my fragile mental and emotional state, I was self-centered and saw only the fact that I had been betrayed and lied to by the one person I believed could (and would) never let me down—my husband. In my narrow scope, all I knew was that my marriage would never be the same. I could never trust him again. I felt broken and very alone. I didn’t really know Jesus then. So I didn’t know I really wasn’t alone. Our marriage suffered immensely over the next five years as we found ourselves going into deeper and darker places that began with the loss of a child (by our choice)–places from which only a miracle would deliver us. We continued to battle an enemy who sought to utterly destroy our lives and spirits. We relocated to Florida, believing a new place, would offer a new start. Leave everything behind. But it wasn’t so. In our effort to cope in the aftermath, we battled addictions and fought for a marriage and family that hung by a gossamer of a thread.
It took me a very long time—years—to fully come to terms with all that had happened. The hardest part was forgiving myself. You see, it was all about me. I made it all about me. All of it—the pregnancy, the decisions, the process, everything—was my fault, my burden, my torment. Mine and mine alone. I failed to see the people around me. I failed to see others were hurting as well. I failed to see that the whole ordeal was just as hard for Greg as it was for me, if not harder. I failed to see him (or anyone else for that matter) as someone who would truly care and as someone who would love and support and encourage me regardless of the outcome. I even failed to see God in the picture–his sovereignty no where on my radar. My own selfishness and my own pride buried me deeper into a lonely and self-inflicted pain.
But I praise God that He is so good, for my story doesn’t end in despair! In the midst of what seemed a never-ending abyss, by God’s grace alone, the light of Jesus Christ pierced my darkness. I wasn’t immediately pulled out of the pit. On the contrary. But as He revealed himself to me, I was slowly able to see Truth. As the reality of the shed blood of Jesus Christ on the cross was poured into my soul, I found hope for the future. Jesus said,
“…if you abide in my word, you are truly my disciples, and you will know the truth, and the truth will set you free” (John 8:31-31, ESV).
Despite the anguish and turmoil of the summer of 1998 and the subsequent painful events in the years that followed, today, I praise God for all of it. Whenever we share our testimony, people seem to be more compassionate, non-judgmental—tolerant even—of the choice we made because of our circumstances. Still, what we did was not right. It was us who chose (the time of) death, not God. Today, I use my testimony to encourage other young women to stand up for God’s truth, not man’s—applicable to their own lives or to be that sole life-line for someone else, a life-line that I never received when I felt the greatest need. But even in that, I know now God had his purposes. Over the years, the Lord has provided countless opportunities for me to minister and come alongside (Christian) women who continue to live with the burden of shame and guilt of a decision they made sometimes decades ago. I share with them that there is forgiveness even after abortion, no matter the circumstances. I share with them that no matter their marital condition, God desires to bring healing and redemption. Beloved, if this is you, know that there is real freedom in Jesus Christ.
“If we confess our sins, he is faithful and just to forgive us our sins and to cleanse us from all unrighteousness” (1 John 1:9, ESV).
“Leave the broken, irreversible past in God’s hands, and step out into the invincible future with Him.” ~ Oswald Chambers
As I get down on my knees, I praise my Father in heaven that he is a God of Redemption. May the Lord Jesus have mercy on me the day I forget from what depths He has delivered me! The lessons I have learned over the years have changed my life and I give Jesus all the glory for bringing me and my family through it. Had I not gone through the trials, I wouldn’t be where I am today—living a life of peace, joy and fulfillment. He delivered the miracles that we so desperately needed to see us through. My testimony (our testimony—mine and Greg’s) is really the LORD’s testimony. A story of His incredible, unfailing love. I am continually awed by His power. Through all the pain and darkness, the Lord, in his infinite sovereignty and grace, picked up all the broken pieces, put them back together, and made me whole again in Him. Glory to God!
“…in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord” (Romans 8:37-39, ESV).