I Am the Face of Infant Loss

We were too young for something like this. Only 22 years old, and we had buried our own child.

Joshua Michael was born on February 13, 1992, after a normal pregnancy, including a normal ultrasound. Everything after his birth, however, was not normal. Joshua was born with a rare birth defect, a diaphragmatic hernia. We were told this is an occurrence in 1 out of every 3,000 births. Immediately after birth, Joshua was not breathing. The medical team frantically provided medical care and confirmed he needed to be transferred to St. Luke’s in Sioux City for immediate surgery. It was foggy, so the ambulance had to go by ground. Omaha was the first choice for surgery, but the doctors felt that was too far. Joshua made it to St. Luke’s and had a successful surgery to correct the hole in his diaphragm, including the rearrangement of organs such as the intestines, stomach, and spleen which had traveled through the herniated diaphragm and developed in his chest. We were informed that the next few days would be critical for recovery.

Having just given birth, I had stayed behind as a patient in the Orange City Hospital. I was given a room in the non-OB part of the hospital. I later learned that was because they didn’t expect Joshua to survive the trip and didn’t want me to be near the post partem rooms with other new moms and their babies.  Once transferred to St. Luke’s—because by this time, the necessity of mother and newborn bonding was understood—I was able to see Joshua for the first time after his surgery. Nothing prepares you for seeing your child in the NICU, especially not a baby over 8 pounds amongst preemies. When Joshua’s condition started to deteriorate two days after his birth, his doctor decided to transfer him to Omaha. We said our good-byes, prayed with the hospital chaplain, and watched the helicopter take off. Again, there was fog, and the helicopter had to land before Omaha; the ground ambulance couldn’t get Joshua to the hospital before he passed away. My husband Mike and his parents had driven to Omaha, arriving shortly after Joshua had passed. Mike was able to hold Joshua—something I was never able to do. This experience was definitely heartbreaking, but I still didn’t know some of the toughest days for us lay ahead.

Some of those days are a blur, and some are crystal clear: the meeting at the funeral home, picking out a very small casket, planning the service, fielding constant visitors and phone calls. Feeling over and over that we were too young for this and couldn’t believe this was happening. As we sat in the front pew of church at the funeral, I thought back to just a week before, when I had been in the hospital in labor, expecting to take a healthy baby home with me.

Everything was hard, so much harder than we expected.

It was the heartbreak when others wanted to share exciting news with us that they were expecting a baby. If you have lost a baby, maybe you understand that it is extremely tough in those first stages of grief to share in the joy of someone else’s pregnancy. You want to be happy for them, but you can’t help feeling hurt and even resentment. We knew that what we felt was selfish, but knowing doesn’t make it any easier.

It was the phone call we received at six months, reminding us to have our baby vaccinated. As the caller stammered and apologized, I wept openly over the phone.

It was sobbing through a niece’s baptism one month after Joshua had been born. After that, we didn’t go to any baptisms at our church for one full year. We couldn’t trust how we would handle it.

We had some really dark days in those first six-to-nine months. We were young, and our faith was not yet mature. In the first few weeks, family continued checking in on us and we didn’t feel alone. But, it was when everyone went back to their own routines that the tears started to come more frequently. It seemed like we were still grieving and no one was grieving with us. Of course, that isn’t what happened, but that is how it felt. We felt as if people thought we shouldn’t be so sad, as if enough time had passed. Well-meaning people tried to nudge us in that direction. Some comments, which probably weren’t intended to be critical, were taken as hurtful. Suggestions that we just needed to pray more and open our Bible caused us to withdraw from company. We tried to behave as we thought people expected us to behave, covering up the sadness. When asked how I was doing, my answer was always “Fine!” and I was quick to change the subject to something else. My husband, Mike, deserves a lot of credit. He was grieving his child while trying to shoulder the burden of a wife who was pulling away from him and had a lot of anger. Everyone knows that shoving grief down and not dealing with emotions is unhealthy, and yet that was what was happening to us. We felt as though no one understood. We felt alone.

The turning point in our story came by someone we knew who had lost one of their premature twin girls just two months after Joshua. They had found a support group of parents who had lost infants.

That first meeting was truly the work of the Lord in our lives. We attended the gathering a little apprehensively. Everyone there was so gracious to us, and so willing to share their own stories of losing babies. We finally had a place where we belonged! People understood us and guided us through coping emotionally with our grief. It was so therapeutic to talk through our stories and support one another, often in tears. The most amazing lesson was that there is no timetable on grief. Whatever we were feeling was OK. There was no judgment. We were encouraged to be honest with people who cared, to tell others when we were struggling or having a day filled with sadness because of the loss. These dear parents got us on the road to dealing with our loss in a healthy way and moving us forward in our grief journey.

Anyone who loses a child will have wounds that will heal, but such an experience is certain to leave scars. Although we will never be the same, the intense hurt and raw sense of loss has since subsided. We will always grieve that our son that never was able to enter our home and be raised in our family. We had so much love to give and nowhere to go with it.

But in time, God provided our “rainbow baby,” Jacquelyn Hope, who was born 17 months after her brother. A “rainbow baby” is a baby born to parents after a miscarriage, stillborn, or early infant loss, just as the rainbow after the flood was a sign of hope and promise. She was more than the blessing we needed after the loss of Joshua! The words of I Samuel 1:27 were fitting for us: “For this child I prayed, and the Lord has granted the desires of my heart.”

Although there was grief, we also experienced incredible kindness. One little boy from my home church sent us $50 with a card that said he had raised and sold some puppies, and his mom had told him that he should give part of the money to someone who really needed it. He sent the money to us in memory of Joshua. We received countless other cards and letters. The cards and letters from those who had lost a child were especially meaningful. Some we knew, and others we did not. Some had touching stories of babies who had died years earlier, and yet the parents still felt the loss and grieved with us. That made us feel that we were not alone in this journey. Someone from our community who had also lost their firstborn son even sent Mike a card on his first Father’s Day, saying how much he understood the emotions that went along with this day. Those expressions of Christian love helped us in ways we cannot even explain.

After losing a child, Mike and I have tried to reach out to parents with early infant loss. We want to share our story with them and have them understand that somebody else has made it through this process and cares enough to make sure they do, too. We have had great conversations with other grieving parents. So, I thought I had this figured out. But about 15 years ago, an elderly lady in our church approached me and asked how I dealt with the grief of losing a child. She had recently lost a grown son and granddaughter in an auto accident. I was so caught off-guard that this matronly saint of the church would ask my advice on grieving. I was very unprepared, and I often wish I could have had a “do-over” of that conversation. I kept thinking about how my loss couldn’t even compare to hers. I questioned why I should always share our story when it seemed like those who had lost a child at 4, or 14, or 40, had a much more severe loss than I did. Why did I think I had so much comfort to give? But, I came to realize that the Lord uses us in whatever position we are in; we are not to judge one person’s grief over another. We can always bless each other, in so many ways.

After losing a child, there are things that others might not understand. I am fiercely protective of my children, always fearing I might lose another one. Pregnancies are stressful and the anticipation of the delivery is even more so. I worried when there was a routine childhood illness, when my teenagers were out with friends, when they went off to college. I received more exasperated declarations of “Oh mom!” than I can count. But the Lord, even in the midst of worry, has provided us with three healthy children—Jacquelyn, Matthew, and Brooke—who have grown into beautiful young people. Even now, Mike and I as parents are learning the process of letting go.

There are still unexpected moments, such as the medical form on which I have to list my pregnancies and the subsequent hope that the nurse doesn’t ask me about my four kids. There have been some awkward moments in which I wondered if I was wrong in not mentioning Joshua. Enough time has passed that, even though we consider him our first born, we answer “yes” when asked if Jacquelyn is our oldest. This, I believe, is not a betrayal of Joshua, but more of an acceptance of his place in our family. Those who know us well know of his short time on this earth, but others may not ever realize Joshua was born and taken away from us so soon.

My advice for the Christian is just to “be there” for that grieving parent. It is not your job to always have the right thing to say, quote Scripture, or try to “fix” things. Sometimes, those parents just need you to sit next to them and hold their hands. Words are not always necessary. It is OK; death is not natural, and no one has this all figured out. At times in our grief journey, we too pushed people away instead of admitting weakness and accepting help, but no one should go through this alone. Reach out to those who are experiencing loss. Ask what you can do. You might not have the right words to say, but they will always remember the love of Christ shining through you. After all, “Weeping may endure for a night, but joy cometh in the morning” (Psalm 30:5b).