Ian – Our Infant Loss Story

In early February 2012, I found out I was pregnant for the first time! It seemed so surreal but I couldn’t have been more excited. My husband, Joel, and I had planned this pregnancy and were thrilled to be expecting our first child, due October 18th. Aside from the results of my hCG blood work being a bit low in early pregnancy, everything was going fine.

We anxiously awaited our ultrasound appointment that was set for the 18th week of pregnancy. It sounds so absurd now, but going into that appointment all I wanted to know was the sex of the baby. My focus was on leaving the office and planning how we would decorate the nursery. This day, this appointment, was something I had dreamed about for years. Joel and I would find out if we would be welcoming a little boy or little girl into our family. My excitement was through the roof!

This being my first pregnancy, I wasn’t quite sure what to expect to see on the ultrasound screen. The tech asked Joel and I if this was our first baby, and when we excitedly answered with a, “Yes!” she fell silent. I wasn’t sure if she was supposed to be saying anything as she looked at our baby, but I decided not to ask questions. She eventually made a comment about how windy it was outside then stated she was finished with the exam. She apologized and said she was not able to determine the sex of the baby and told us she would be back after speaking to the radiologist. The tech left the room and I could feel in the air that something was not right. I tried to dismiss my concerns as Joel and I started talking about how disappointed we were that we didn’t get the answer to our burning question. Would we have to wait until birth to find out the sex of the baby?! The ultrasound tech returned after a few minutes and let us know my OB doctor (I will call her Dr. P) wanted to see us. I thought that was odd but didn’t let myself think too much about the implications.

Unexpected News

We made the short drive to Dr. P’s office where there was a room ready for us. She came in, sat down, then told us that it appeared our baby’s kidneys did not develop and there was possibly not a bladder, either. She said I had an appointment with a doctor of Maternal/Fetal Medicine (MFM) the next morning. The MFM would take a closer look to determine whether or not the kidneys and bladder were there, and if they were, why they were not working. I was completely dumbfounded and asked her what this news meant. I will never forget that, as she was sharing this information with us, Dr. P started crying. She was pregnant herself and I could tell she was devastated for us. She told us that, if there were kidneys/bladder present that weren’t working, we would discuss how to move forward with that situation. But if there were truly no kidneys, our baby would not live after birth. My head was swimming. I did not know what was happening.

We left the office and drove home. We were worried for our baby. Heartbroken over what might happen to our little boy or girl. Our friends and family were excitedly waiting by their phones for us to announce the sex of the baby. There were so many calls and texts I had previously been enthusiastic about making. Now, I didn’t want to tell our loved ones the news we had been given.

I remember calling my mom and crying while I told her. Then some close friends came over and we had a visit from our pastor. It was beyond strange. It was not how the day was supposed to end. Never would I have imagined this happening. So many thoughts and “what ifs” ran through my head. I hardly knew what to think. But one thing I didn’t question was the love I had for the child growing inside me. I would do anything and everything I could possibly do for this little one. I didn’t know what the next step would be if we found out the baby did have kidneys. If we had to undergo treatments and surgery and bed rest and monitoring and medicine and hospitals and appointment after appointment until birth, I was going to do it. There was no doubt in my mind. I would give all I had to make sure this baby had the best chance at life.

The MFM Appointment

My parents made the 5 hour drive to be with us that night and go to the MFM appointment the next morning. At the appointment, the ultrasound tech gave us the only happy news of the day…we were having a boy! Then the MFM doctor came in and cried as she told us our son had Bilateral Renal Agenesis. He did not have kidneys and would not live after he was born. Joel and I held each other and cried. Our hearts were shattered. We mourned the loss of our future with our son. We knew we would not get to raise him and his time with us would be painfully short. But, Joel and I decided we would be the best parents we could be for our son while we had the chance.

The next conversation with the MFM was about our options. We could either end the pregnancy or continue it until our son was born or he died in utero. There was nothing we could do to save his life. At that point, no baby had ever survived a diagnosis of Bilateral Renal Agenesis. It was not hard for me to decide that I would carry him until God decided his time on earth was through. I was not in denial about the ultimate outcome as I made the decision to continue the pregnancy. I knew his life after birth was not sustainable without kidneys. As long as the baby was in utero, I would keep him alive unless God had other plans. I knew that God gave me a son to care for and mother and to love unconditionally.

Joel and I decided on the name, “Ian” because it means, “gift from God.” Ian was our most precious gift. His life was not going to be everything we had hoped and dreamed. We had a new reality that we would have to figure out how to navigate. But, nevertheless, we would embrace our son as a gift from God and treasure him as such.

The Continued Pregnancy

I saw Dr. P once a week for the remainder of my pregnancy. The nurse at her office, Judy, had lost an infant son and was a huge support for us. She offered us wisdom, encouragement and comfort as a parent who had experienced loss. We also met several times with a nurse at the hospital, Carol, whose job was to help bereaved parents. The three of these ladies provided a great amount of moral support for Joel and me. We built deep relationships with them as we continued the pregnancy, not knowing when Ian would make his arrival. I was so thankful to be surrounded by my doctor and nurses who cared so much not only about me, but about Joel and Ian as well. They made walking this painful road a little more bearable.

I had another appointment with the MFM, at about 30 weeks gestation, who confirmed again that Ian did not have kidneys. She was kind and compassionate about our situation and our decision to continue the pregnancy. We asked about organ donation. She thanked us for considering helping others through this situation then informed us that Ian was not a candidate.

Joel and I hoped that my body would sustain Ian’s life until I went into labor, he would make it through delivery and be alive after birth. We wanted to have a few minutes, or even hours, of holding him while he was still breathing. We could possibly even hear him cry. Our hope was to be able to hold him as he took his last breath.

Three-and-a-half months went by as Ian moved and kicked in my belly. It was three-and- a-half months that felt like an entire year. It was grueling. However, I cherished the time I had with him while he was still alive. I wrestled daily with the paradox of wanting him to be born but not wanting him to die.

Ian’s Birth

It was a 100+ degree Friday in September and I was 34 weeks pregnant. I went to work in the morning then left to work from home in the early afternoon. Contractions started happening as I was sitting at our dining room table working on my laptop. I dismissed them as Braxton Hicks contractions (not real labor) and continued my work. About an hour later, Joel came home. I told him I was having contractions but didn’t think I was in labor. The contractions started to get stronger and closer together so I decided to time them. They quickly became less than five minutes apart so I decided to call Dr. P. I knew she was in another state visiting family but I called her anyway, hoping she would tell me to stay home. I wanted her to tell me the baby wasn’t coming. But he was. She told us to head to the hospital. Upon examination and talking to the on-call doctor, we were told our son would be born that night or the next morning. I had the nurse check to see if Ian’s heart was still beating. We heard the thump, thump, thump we were hoping for.

My thoughts and feelings were all over the place as labor progressed. I was excited to meet our son but knew this meant the end of his life. I was also sad that Dr. P was not going to be there to deliver Ian. To help comfort me, she called Judy and asked her to be there for Ian’s birth. Judy came and was by my side the entire time, a memory I will always cherish. Carol was there as well, making sure the experience of welcoming our son into the world was the best it could be, all things considered.

I was not hooked up to fetal monitors so had Ian’s heart rate checked several times with a doppler. His heart was still beating when it came time for me to push. At 11:07 p.m. on September 7th, 2012, Ian was born weighing 3 lbs. 7 oz. and 16.5 inches long. The cord was wrapped around his neck, which caused him to pass away during the delivery. We did not get the chance to see him while he was still alive.

Joel and I got to hold Ian’s little body. We snuggled him and kissed him and looked him over from head to toe. We opened his blue eyes and ran our fingers through his full head of blonde hair. Joel’s mom, my parents and my sister, Kylie, were there as well. Carol took pictures, made footprints, helped us bathe him and did everything she could to help us embrace the short time we got to have him in our arms.

I am thankful for Ian’s life even though it ended much sooner than I had planned. I will always miss him, my first-born son. Missing him and being sad that he is gone does not negate the fact that I trust that God’s way is perfect as Psalm 18:30 tells us. I choose to celebrate that he was once here rather than grow angry or resentful that he is no longer. My hope as I share about Ian is that others might find encouragement, strength, comfort and healing through God’s workings in this story. God’s works are wonderful, I know that full well (Psalm 139:14).