Category Archives: stillbirth

“Where is Baby Theo?” and other questions from my two-year-old

This morning I woke up with my two year old daughter, G, snuggled up next to me. “Good morning, Mama,” she said. And then, out of the blue, “I went to the hospital to see you. You weren’t feeling well. And you cried. I wanted to hold Theo but I wasn’t big enough.” More than three months have passed, and her memory of that day is still vivid. With an aching heart, I reminded her that the reason she couldn’t hold Theo is because he died. I told her she was still his big sister and reminded her that she got to sit on Daddy’s lap while Daddy held Theo, so she would be able to see and touch him.

“He had a little cut on his nose,” she said.

“Yes, he did.”

“I still can be his sister.”

“You’ll always be his big sister.”

When we first found out that Theo died, Nate and I had a conversation about whether the kids should come to see him after he was born. We decided that the older kids could choose for themselves whether to come, and we decided that it was probably not something that G needed to experience. We figured she was too young to understand and probably would not remember it anyway. But after both of the older kids came to meet Theo and have their pictures taken with him, we realized that G needed to come. Even if she didn’t remember, we worried that someday she would resent the fact that the other kids had pictures with Theo and she didn’t. So we had my in-laws bring her to the hospital to meet him.

After a stressful night with not enough sleep, G was in tired toddler mode. She was fussy, grumpy, and uncooperative. But when Nate’s mom put her on his lap while he held Theo, she quieted down immediately. She just looked and looked at Theo, then reached her hand out and touched him ever so gently. We tried to explain to her that Theo died, and I could see her little brain trying to make sense of this baby next to her who didn’t look quite like the other babies she had seen and held. I felt like I had let her down. Lied to her. All these months we had talked about how she was going to be a big sister, about Theo’s birth and all of the things that would come after. Even though she was only two, she had expectations for his life as well.

For the first couple of weeks after I came home from the hospital, she asked about Theo a lot. She couldn’t seem to understand where he was. Was he in my tummy? Was he at the hospital? We kept explaining that Theo was not in my tummy anymore, that he died and he would not be able to come live with us like we had planned. She (and the other kids, for that matter) really connected with the idea that Theo was in Heaven with Nana. For G, this was something she could grasp. She remembered Nana and understood that she couldn’t see Nana anymore, so she started to realize that she also wouldn’t be able to see Theo anymore.

After Theo died (and after my mom died as well), everyone told us that G wouldn’t really understand and, therefore, it probably wouldn’t affect her very much. I have not found that to be true. Death and grief have been continually present in her life, and they have affected her and shaped her worldview. For example, one night last week, I was taking her upstairs for bed. She always chooses a different doll or stuffed animal to sleep with. That night, she picked up one of her favorite dolls and gasped, “Mama! My baby died!” I don’t know many other two year olds whose pretend play includes the death of their baby dolls.

G also recognizes death in movies and asks questions about it. At the beginning of Frozen, when Anna is unconscious, she asked, “Why did Anna die?” We explained that Anna didn’t die, she was just sleeping. Similarly, we recently watched Finding Nemo as a family. When A and M were younger, I always skipped the part in the movie where Nemo’s mom dies because I thought it was too sad. But this time, we watched that scene. G immediately asked me, “Mama, where is Coral? Did she die?” I explained that yes, she died. “Why did she die and go to Heaven?” G asked. I told her that people don’t choose to die, but that sometimes it just happens.

“Nana and Theo died and went to Heaven,” she said. “I can’t see them anymore.”

“That’s right,” I said, hugging her. “But they will always love you and you will always love them.”

“I will always love them,” she repeated.

Theo and G

The White Circle: A Dad’s Perspective

by Theo’s dad, Nate

There was a magnetic white circle on the outside of our hospital room door. It wasn’t very big — just about two inches or so across — and it had no identifying features, no text or pictures on it. It was hung just at eye level, a little below the room number and slightly askew of center.

I’m not sure how long I stared at it without fully realizing it was there. The first night, I fixated on it while I stood out in the hallway speaking to my brother on the phone in a quiet, defeated voice. Again, in the early morning hours when my sister returned my call, I allowed it to be an anchor, something to focus on without thinking about, which helped keep my mind from drifting away mid-sentence. I didn’t put any thought at all into it at first, it was something that was just there, something of no real significance.

On our second day in the hospital though, it took up a permanent settlement in my mind, and it’s doubtful it will ever leave.

I had gone down the hallway to the patients’ kitchen to get…ice…soda…juice…really anything I could find that would provide me with some creature comfort. Since we had come to the hospital the night before, time had moved by sporadically. My brain would consciously accept new information for about an hour at a time, then everything would slow down while I tried to process and accept the reality, and the gravity, of our situation. As I left the kitchen and rounded the corner to our section of the wing, it occurred to me that I didn’t actually know which room was ours. Up to that point, I had barely strayed out of the room, and when I did I just let my subconscious guide me back. However, as I stared at the last few doors in the wing my subconscious happily reminded me that we were in the room with the white circle under the number.

I had seen it there probably a dozen times already, but for some reason when I looked at it that time, it sank in. It wasn’t something that got stuck on the door once and never removed. It was how the staff new which room was THE room. It was why the nurses and doctors knew to be somber when they entered, why the hospital staff didn’t smile or congratulate us on our new baby, or even look us in the eye, when they entered the room. That small white circle was how the hospital told everyone that death had come for my son.

Self-control is not a virtue I possess in great volume. When I realized why it was there I wanted to rip it off and shout at the person who put it there. I wanted to move it to a different door with the childish hope that it would take death and sadness with it, and I would enter our room and everything in our little world would be okay.

But I didn’t do it. Instead, I remembered that it didn’t work out okay, and that this was our new reality. Our new normal.

So I went back into our room, and we forced ourselves to both fit on my wife’s hospital bed, and we held our son.

And cried.

As I came to terms with our situation, I feared, at first, that Theo would be forgotten. Being a stillborn, only a very small number of people ever saw him. For most, his life was a little more abstract — he was the squirmy thing under the surface of my wife’s enormous belly, then not. However, I soon realized that wasn’t my true fear. My true fear was that he would always be remembered, but that his entire existence would be defined by how and when he died — that he would be remembered only as a tragedy that my family suffered through. Something bad that happened to us. A reason to pity us.

I spoke at my son’s funeral — it’s something, as a parent, I never thought I would have to do. But, he wasn’t given the opportunity to speak for himself through the actions of his life, so I did it.

I asked that everyone who knew him try, in time, to let their grief subside, and remember him not as a tragic thing that happened to my family, but for what he really was — our son.

I hope in time I can learn to do it myself.

Facts about stillbirth

After we lost Theo, I was surprised at how many people told me that they didn’t know stillbirths still happened these days. While I didn’t know much about it myself before it happened to me, I was fortunate to have two Facebook friends who had experienced stillbirths and shared their stories very openly. Thanks to these two remarkable women, I had some idea of what to expect after we received the news that Theo had died.

In order to increase awareness of and knowledge about stillbirth, I wanted to share some basic facts about stillbirth and how they relate to our experience with Theo.

Facts About Stillbirth (see American Pregnancy Association for more)

Stillbirth is defined as the intrauterine death and subsequent delivery of a developing baby at or after 20 weeks gestation. Stillbirths occur in about 1 out of 160 pregnancies. Though a cause is not identified in one-third of stillbirths, some common causes include the following:

  • Placental problems, such as placental abruption and preeclampsia
  • Genetic abnormalities
  • Growth restriction
  • Infections
  • Umbilical cord accidents
  • Maternal health issues, such as diabetes and high blood pressure

There are a number of documented risk factors for stillbirth. However, not one of the many, many women I have come to know both personally and online over the past two months had a single one of these risk factors. I am not listing them here because my overall goal is to let people know that stillbirth can happen to anyone, regardless of “risk factors.” However, there are some steps that can possibly help prevent it.

Preventing Stillbirth

While the incidence of stillbirth has decreased significantly over the last several decades, approximately 26,000 babies are stillborn in the United States each year. The following steps can help prevent stillbirth:

  1. Avoid alcohol, drugs, and smoking.
  2. Notify your doctor if you have any vaginal bleeding.
  3. Most importantly, be aware of your baby’s normal movements (i.e., count kicks), and see your doctor if you note any changes.

Kicks Count

I cannot stress the importance of this enough. I truly believe that if I had had a better understanding of kick counting, I could have saved Theo. Theo was an extremely active baby. However, for several days prior to his death, I had noticed a decrease in his movements. Unfortunately, all I knew about kick counting was that the official guideline was “10 kicks in a 2 hour time period.” When I did my daily counts, I always counted at least 10 movements in 2 hours, so I felt reassured that he was okay.

As I have since discovered, there is much more to the “Count the Kicks” movement than simply counting 10 movements in 2 hours. The most important thing is to be aware of YOUR baby’s movements and call your doctor immediately if you notice drastic changes from his or her normal pattern. Below are the general guidelines. Please see Count the Kicks for more information.

  • Count the Kicks every day, preferably at the same time.
  • Pick your time based on when your baby is usually active, such as after a snack or meal.
  • Make sure your baby is awake first; walking, pushing on your tummy or having a cold drink are good wake-up calls.
  • To get started, sit with your feet up or lie on your side. Count each of your baby’s movements as one kick, and count until you reach 10 kicks.
  • Most of the time it will take less than a half-hour, but it could take as long as two hours.
  • Log your recorded times into a kick chart.
  • Call your doctor if you count fewer than 10 kicks in a two hour period OR if you notice a significant change in your baby’s movements.

What Happened to Theo?

The cause of stillbirth is undetermined in one-third of all cases. Officially, Theo’s death was listed as “cause undetermined.” However, I experienced a placental abruption during labor that could have potentially started out as a partial placental abruption and deprived Theo of oxygen without causing any bleeding or other symptoms (according to the American Pregnancy Association, about 20% of cases of placental abruption occur without vaginal bleeding).

In addition, according to the doctor who delivered Theo, the umbilical cord was wrapped around his legs “several times.” However, the doctor also said that the cord wasn’t wrapped so tightly as to make him think that Theo’s oxygen and nutrient supply would have been cut off.

In short, the doctor could not clearly identify either of these factors as a definitive cause of Theo’s death, but it was likely one or the other, or a combination of these issues.

The What Ifs

Naturally, I feel guilty that I was not able to save Theo, and I live with the “what ifs” every day. What if I had gone to the doctor the day before? What if I had been less busy that day and noticed sooner that he wasn’t moving? I know that I can’t change what happened, and I don’t blame myself or anyone else. But the “what ifs” will never go away.

My family also has a lot of “what ifs” when it comes to my mom’s cancer. My mom always prided herself on having a very high tolerance for pain, on being a “good” sick person, and on never complaining. She had pain for many, many months before she finally went to the doctor. When she did go, the cancer that had originally started in her ureter had spread to her left kidney, her liver, her lungs, and her bones (spine, ribs, and arm). What if she had gone to the doctor sooner?

If there’s one thing I want everyone to know, it is not to be afraid to see the doctor, no matter what the reason. Don’t ever think you are overreacting or being a nuisance. And if you are not happy with the response you get, see another doctor. There is no harm in being overly cautious — you could potentially identify a serious problem early on. And even if everything turns out perfectly fine, at least you won’t have to live with the “what ifs” for the rest of your life.

 

Grief is the price we pay for love

It has taken me a long time to write this post. For a while, I even considered starting my blog with a different post. But I know that many of you are reading this because you have questions about what happened to Theo, and I want to answer those questions. I can’t tell his story without weaving it together with my mom’s story, so I will try to tell both stories.

We found out we were pregnant in June 2013, just over a year after my mom was diagnosed with Stage 4 urothelial cancer. We were very excited, since we had just started trying for baby #4 in May. The early weeks of my pregnancy passed quickly – no morning sickness and not even really any fatigue, which was a good thing since I was busy caring for my mom as her illness progressed.

My mom spent the better part of September 2013 (3 weeks total) in the hospital with a variety of different infections and side effects. She was finally able to come home on September 30, though she was very weak and had difficulty even getting out of bed.

On October 2, we had our ultrasound and found out that we were expecting a little boy! I was so thrilled. With two boys and two girls, our family would be perfect and complete. My mom was elated to have another grandson, and my 9-year-old son was thrilled at the idea of finally having a brother. We decided to choose a name for him so that my mom would know his name in case she died before he was born. We chose the name Theodore, “Gift of the Gods,” a Greek name to match his brother’s.

October was a difficult month. Though she was able to attend the Happiness Sprinkling organized by a friend for her 60th birthday on October 3 (see photo), and we had a wonderful birthday party for her, she continued to deteriorate at home over the next few weeks. She was often confused, and when I came over on Sunday, October 27, and found her suffering from a severe headache, my heart sank. Over the 17 months she had battled cancer, the biggest fear was that it would spread to her brain. The headache, coupled with her confusion in the preceding weeks, was a sure sign that our worst fear had happened. My dad and I took her to the doctor for an MRI on October 28. I called my brother to come so we would be together if we received bad news. After a grueling wait, the doctor confirmed that her cancer had metastasized to her brain, and the only thing left to do was to make her as comfortable as we could for the remainder of her life.

Mom-happiness-sprinkling-blog

We met with the hospice nurses and decided to do hospice care at home. Over the next week, I spent the better part of every day at my parents’ house helping to take care of her. My aunt and uncle came from Texas, and we did everything we could to comfort her, relieve her pain, and just be with her during her last days. She passed away early in the morning on November 3, 2013, with my dad, my brother, and I by her side.

The last weeks of her life, there were many times that I forgot I was even pregnant. I was so focused on her that I could barely think of anything else. But after her memorial service was over, Theodore’s birth became a highly anticipated event for all of our family. The days and weeks could not pass quickly enough. We looked forward to Theo’s birth as a ray of hope that would bring joy back into our lives after losing my mom.

Time did pass, though it seemed slow, and soon it was Super Bowl Sunday, February 2, 2014. We are from Denver, so this Super Bowl was a big deal for my family. We planned a party (Mom always threw a Super Bowl party), so I got up that morning and started running errands to get ready for the party. At about 1:30 pm, I suddenly realized that I hadn’t felt Theo move very much that day. I sat down in my chair and focused on him, but still felt nothing. I drank some orange juice and laid on my left side to do a kick count. An hour passed. I felt nothing.

We headed over to my dad’s house with the kids, and I called First Nurse on the way. They told me to come in to the hospital for fetal monitoring. We dropped the kids off and headed to the hospital, joking on the way that I was probably in labor and this was the reason for the decrease in Theo’s movements. We hadn’t put the car seat in the car or set up the co-sleeper yet, so we joked about how unprepared we were for Theo’s birth.

We arrived at the birthing unit and were quickly shown to a room to be hooked up to the fetal monitor. The nurse hooked up the monitor and ran it across my belly, listening for Theo’s heartbeat. There was only silence. She called in another nurse, and they tried for several minutes with no success. The on-call doctor was called in to do an ultrasound. I was already crying by the time he arrived, though my hubby kept trying to reassure me that everything would be okay. The doctor placed the wand on my belly and turned on the monitor. When the picture clicked on, the screen was centered right on Theo’s chest. There was no movement and no noise. Silence. Stillness. After what felt like an eternity, the doctor finally said, “I’m sorry to have to tell you this…” He did not need to complete the sentence. All I remember at that point is just saying, “No, no, no,” over and over again. The next thing I remember saying is, “My mom just died in November.” I kept repeating this to every nurse and doctor I saw. I could not comprehend that God, or the Universe, or even just luck would deal me two terrible blows like this in such a short time.

We called my in-laws, and my hubby went to my dad’s house to tell him, my brother, and our other three children what had happened. Soon we were all gathered at the hospital, grieving Theo’s death together. I asked the doctor if they would induce me right away or if they would wait. He said it was up to us, so I chose to be induced that night. We kissed our kiddos and sent them with loved ones for the night, then they transferred us to a delivery room at the farthest corner of the birthing unit.

Our amazing nurse, Sarah, asked about my preferences for pain management. My plan had been to labor naturally if possible, but, given the circumstances, I asked for an epidural before the induction was started. The anesthesiologist came, the epidural was started, the Pitocin was started, and we settled in for a long night of labor. The doctor had also prescribed Valium for me so that I could sleep through most of the labor. I remember texting with my brother at about 11:30 pm when he wrote, “You should take the meds and get some sleep.” I replied, “I’m afraid if I take a sleeping pill, I will never wake up. Stupid, I know.” He told me it wasn’t stupid, said he loved me, and we signed off.

About fifteen minutes later, I was dozing off when I felt a pop and a sensation of wetness. I woke my hubby and asked him to check if my water had broken. He lifted the blankets, and his face turned white. “You’re bleeding,” he said. “Really bad.” We called the nurse and she arrived quickly. My blood pressure had dropped to 55/30, so she quickly started another IV. I was slipping towards unconsciousness when I looked over and saw the terrified expression on my husband’s face. He reached for my hand, and I whispered, “I’m scared.” The doctor did another quick ultrasound and told us that I had experienced a placental abruption and he needed to do an emergency C-section immediately to stop the bleeding. (The doctor told me later that if I had taken the Valium and slept through the bleeding, I might not have survived.)

The next fifteen minutes were a blur. I remember shaking uncontrollably, and I remember someone stroking my forehead. I discovered later that it was my husband, but at the time I could have sworn it was my mom. She always stroked my forehead when I was sick or sad. I remember my hubby telling me that Theo was here, and my heart just aching to hear him cry or see his little feet or hands move. My husband went with the nurse to wrap him up. I laid there, tears streaming down my face, waiting for the doctor to close my incision. Sarah, the nurse, came over and told me that he was absolutely beautiful and perfect. After what felt like an eternity, Nate brought him over and I saw my beautiful baby boy for the first time. He was perfect.

Our other three children and our parents all came to meet him, to say hello and goodbye. Our son told him, “You are the best little brother I ever could have asked for.” A photographer from the wonderful organization Now I Lay Me Down to Sleep came and took photos of our family, of Theo. We had sixteen precious hours with him before we kissed him goodbye for the last time and the hard work of grieving really began.

Theo was born at 12:19 am on February 3, 2014, three months to the day after my mom died. He weighed 6 lbs. 9 oz. and had a very little bit of curly black hair. He looked just like his big brother. At his memorial service, my hubby talked about how we wanted Theo to be remembered not as a sad thing that happened to our family, but as our beautiful son. His life was short, but he lived. And he will live on in our hearts forever.

i carry your heart
(i carry it in my heart)
— e.e. cummings

 Mom-Theo

— Theodore, February 3, 2014