Finn, Infant Loss, Stillbirth

It’s your first birthday in heaven

I lit one candle on your cake

But you don’t need a wish

What more could you desire

Than everything surrounding you

What could be a greater gift than

One year without pain

One year without tears

What could compare to

Being held in His arms

And seeing His wonderful face

While He listens to you pray

Your first sight the glory of heaven

Your first lullaby was heaven’s worship

Your first steps on golden streets

Finn, Grief, Infant Loss, Stillbirth

Two years after we initially started trying, we wondered if we would ever be able to have a second child. In June 2015, we went on vacation to the Smoky mountains and visited Dollywood. After riding a triple inversion roller coaster, I felt very off, which was unusual for me because I usually handle roller coasters very well. The next day I took a test and was thrilled to see two lines — I was finally pregnant with our second child! My pregnancy progressed smoothly and uneventfully, and our 18-week sonogram revealed a healthy baby who danced his little legs around and showed off for us. We learned our baby was a boy. Over the next few months, we painted his room and re-assembled the crib. As his due date of February 27th drew closer, I unpacked the baby gear and folded the newborn clothes neatly in his closet, including a couple of “Little Brother” sleepers I had picked out just for him. I packed a hospital bag with a newborn-sized coming home outfit. I unpacked and washed the infant car seat and ordered diapers online. We were so ready and excited to meet our baby!

On the morning of January 23rd, I didn’t wake up until it was almost time to leave for my hair appointment. I was exhausted as I had been fighting a cold and sinus infection all week. It didn’t seem like my baby had been very active that morning, but then again I hadn’t been awake very long and thought I might have just missed his activity. He was usually most active at night around bedtime. I had an anterior placenta, so it was often difficult to notice his movements unless I was paying attention. I didn’t feel him as distinctly as I had with my first child, Jaxton.

After my hair appointment, I still wasn’t feeling much, so I went home determined to monitor his movements. At home I glided the home doppler over my belly. Immediately, the sound of his strong heartbeat met my ears and I relaxed a bit. Maybe he was just having a slow day or in a different position than usual. Lying on my side in bed, I attempted to count his movements. I tried shaking my belly to get a reaction. I was getting barely anything. I decided to go eat and drink some sugary juice to see if that would perk him up. As I ate, I noticed his feet were poking out in their usual spot at the top of my belly. We often played a game in which he would poke out his feet and I would push back in on them and he would react by pushing back or moving them. On that night, his feet seemed to be pressing out with more force and they remained that way despite me pushing on them.

At that point, I was getting really worried. I checked the doppler again and his heart still sounded strong. I sat in a chair with my 3 year old son Jaxton on my lap while he was watching YouTube videos. In retrospect he should have been in bed, but I was too worried about the situation at hand to go through our bedtime routine. Usually when Jaxton would sit on my lap and lean against my belly, the baby would squirm or kick in response. My husband Phillip and I always joked it was sibling rivalry starting early. That night, there were no kicks or squirms. I thought I felt a shifting inside of me. I grabbed my doppler, hurriedly rubbed coconut oil on my belly to help it glide, and listened again. Nothing but the sounds of my own body met my ears. At that moment, I truly understood the meaning of deafening silence. My heart raced as I searched and searched, hoping and praying that he was just hiding or that my doppler wasn’t working correctly. I frantically told Phillip we needed to go to the hospital right away. We grabbed our coats, bundled up our son, and rushed out the door. I didn’t say a word the whole way there; I just prayed to God to please let my baby be ok.

At the hospital, they checked me in, asking how far along I was. 35 weeks. After taking my vitals, they told me to have a seat in the waiting room while they paged the OB floor. My son had to use the bathroom, and I remember walking into the bathroom and immediately seeing a penny on tails. My stomach churned with fear and dread. I was wheeled up to the OB floor, changed into a gown, and tried unsuccessfully to remain calm as they strapped a heart monitor to my belly. The nurses adjusted it and readjusted the monitor, but heard nothing. There was a brief glimmer of hope when the nurse said she thought she heard our baby, only to have it crashing down seconds later as she checked and realized she was hearing my racing pulse. She said she had to call a technician to come to the room with a machine so they could take a closer look. I knew things were looking grim at that point. Continue Reading

Finn, Grief, Infant Loss, Stillbirth

2016… In ways I am ready to say good riddance to this year of the worst that has ever happened in my life. Its pain has been like no other. In other ways, I want to cling tightly to the year that brought me one of the best happenings of my life, my second child. This is the year I got to hold my baby, touch him, and kiss him. No other year of my life will ever contain those unique experiences again. In the true nature of time on earth, all lives will eventually come to an end, and so will months and years. I never want to forget the good or the bad. It is true that both shape who we are, and remembering the sorrow heightens the joy in contrast. I can’t carry my son physically into this new year, but I will carry memories of him and grief over him into each and every new year, and that’s ok. Grief is love, and grief is unending because love is unending. He will always be my child and part of me. He will influence my decisions and perspective in every day of every year that comes and brings me closer to being with him again. Tonight I am lucky enough to get to bring in the new year with my amazing hubby Phillip, my lovable little boy Jaxton, and our dear friends. This year certainly has not been void of all happiness, but I do hope and pray for a new year without the traumas of this year, for my little family and everyone else. I know that regardless of what lies ahead, God is with us in every circumstance and it is in Him I put my hope. Wishing you all a new year full of God’s peace and blessings.

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Finn, Infant Loss, Stillbirth

Today I’ve been looking through my Christmas memories of Jaxton. Jaxton was a newborn for his first Christmas, so this time of year always brings back memories of what it felt like to have a little baby to take care of, and I miss that. While I don’t think they look incredibly alike, sometimes when I look at Jaxton now or look at his younger pictures, I see glimpses of his brother Finn. Those glimpses are great gifts as I can only ever imagine what Finn would have looked like alive and growing, with his eyes open and expressions on his face. This isn’t my best Photoshop job ever, but I wanted to see my babies side by side.

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Finn, Infant Loss, Stillbirth

Some of you may know that I have felt doubt from the beginning about Finn’s post-death diagnosis of full Trisomy 9. That is both due to his lack of exhibiting signs of the condition, and the assumption that was made when he was diagnosed. I had a very normal pregnancy with Finn. No red flags were ever raised. The anatomy scan at 18 weeks was perfect, with absolutely no concerns about his growth and development. He was declared a healthy baby boy. His growth must have dropped off suddenly, rather than him measuring small all along. As I remember, he always measured right on target until my last check-up at 33 weeks, when my fundal height measured 32 weeks. My doctor had no concerns at the time. I was told he measured in range, and to schedule my next appointment in two weeks. At 35 weeks, the day before my next appointment was scheduled, his heart stopped beating. At 3 lbs, 11 oz and 16 3/4 inches, Finn was only in the 2nd percentile for weight for his gestational age. At birth, he measured the size of an average 32 week baby. Since he measured the same size at birth as he did at my last appointment, the logical conclusion is that he didn’t grow after that. This is important because Trisomy babies tend to be smaller than average from early on in pregnancy.

With nearly every Trisomy pregnancy I’ve learned about, there were multiple severe and obvious abnormalities identified during the anatomy scan. These abnormalities usually prompt doctors to do an amniocentesis or CVS, which then comes back positive for Trisomy. It’s a very common theme in Trisomy-related discussion groups. Most Trisomy parents knew at least a few months before birth that their babies would not survive long after birth, if not be stillborn. Trisomy babies also have very distinct physical markers, which vary depending on which extra chromosome they have and how it manifests. The lower the number of Trisomy, the more severely it affects the body and the lower the survival rate. Severe heart, brain, and organ abnormalities are common, but none were ever found with Finn. It is not unusual for Trisomy children to have small skulls, cleft lips, irregular facial features, and overlapping fingers. Finn had none of these physical markers.

At the time Finn died, we had no idea what had gone wrong. Sonograms were done after Finn’s death, but before he was born, to try to identify any abnormalities. An autopsy was performed on his body, but came back with no abnormalities, other than he was small for gestational age and the placenta was small as well. We also had a chromosomal micro-array test (CMA) done to check for chromosomal abnormalities. A sample of fetal-facing placental cells was sent for testing, meaning all the cells tested were from the placenta; none of those cells came from Finn’s actual body. Taking the sample this way is standard hospital procedure from what I understand. The CMA test came back positive for full Trisomy 9. Our geneticist told us Trisomy 9 was absolutely fatal, that it causes severe deformities, most babies with it are miscarried in the first trimester, and Finn would have died shortly after birth if he hadn’t been stillborn. I remember my initial reaction was confusion. How did that describe my baby when it sounded nothing like him? Did they mix up the results with some other person? I just went through an entire uneventful pregnancy and was told I was carrying a healthy baby,  and yet my baby supposedly had a condition that typically causes physical abnormalities severe enough to not survive the first trimester? I never doubted the accuracy of the test results, but I always had trouble reconciling how that diagnosis fit my seemingly healthy baby with no determinable external or internal abnormalities. I felt even more out of place as I spoke with other Trisomy parents. Finn’s story didn’t fit with theirs at all.

A few months after receiving that diagnosis, through an online stillbirth support group, I came across another angel mom’s story . She described how her son’s placenta tested positive for Trisomy 13, but he had normal chromosomes. After talking to her, I found out her son began measuring small at the beginning of the third trimester. The doctors decided to do a CVS to see if they could figure out what was wrong. The cells they retrieved from the placenta tested positive for Trisomy 13, so they assumed he had Trisomy 13 and told her that her son wasn’t going to survive. Most often, the cells in the placenta match the fetal cells so this assumption usually holds true. However, after the doctor watched her baby open and close his hands on a sonogram, which is something a Trisomy 13 baby shouldn’t be able to do, they decided to test his cells, and they found he had normal chromosomes, or Confined Placental Mosaicism. It is a condition in which the placenta is chromosomally abnormal but the baby is chromosomally normal. It is rare and only occurs 1-2% of pregnancies. It happens when either abnormal cells are isolated to the placenta during early pregnancy in a biological attempt to save the baby, or a random cell mutation occurs in the placental cells after the pregnancy cells separate into the fetus and placenta and that mutation continues to replicate such that the placenta is made of abnormal cells. This condition can cause IUGR (growth restriction) that sometimes results in stillbirth. The placenta is abnormal and can’t supply the needed nutrients and oxygen, especially as the pregnancy progresses into the third trimester and demands on the placenta are much higher. Unfortunately doctors did not deliver this mom’s son soon enough and he died in the womb. He was born at 32 weeks measuring in the 1st percentile for weight.

I also met a mom of a full Trisomy 9 baby who died shortly after birth. She is the only mom I’ve talked to with a full Trisomy 9 baby, which gives you an idea of just how rare it is. She said it was very obvious something was wrong at the anatomy scan. Her baby had serious heart and brain abnormalities. A whole section of his brain was missing, as were the connections between the different parts of his brain. He didn’t know how to swallow, resulting in excess amniotic fluid build-up during her pregnancy. As a result, she measured several weeks ahead. After talking with her, I feel even more strongly that mine was a case of Confined Placental Mosaicism rather than fetal chromosomal abnormality. After finding out about Confined Placental Mosaicism, I asked our geneticist if this was was a possibility in Finn’s case, and she agreed it was possible, although rare, and said the pregnancy would have been severely compromised. Since Finn’s actual cells were never tested, we can never know for sure. When I first learned of this possibility,  I was frustrated and overcome with grief again, because it meant he could have lived had he been delivered soon enough. However, now that I have come to terms with it, I’m actually more able to accept Finn’s death and the circumstances surrounding  it, because it actually makes sense. It fits.

Additional information:

Wikipedia – Confined Placental Mosaicism

Confined placental mosaicism