Grief, Infant Loss, Stillbirth

As I walk through this grief journey, I have so many people tell me how strong I am. I don’t feel strong, but I think what they see is Christ strengthing me (Philippians 4:13). Sometimes I think about where I would be in this journey without God, and it’s a scary thought. Without God and the encouragement of His word, I would certainly be angry and bitter at the unfairness of life, especially given Finn’s death on top of our fertility issues. I would likely be in a deep, dark pit of despair with no light shining in. I think I would also feel a lot of unrest.

Something I have felt ever since we found out Finn had died is a great deal of peace about the situation. In the hospital during labor, lyrics from the song “Lord (I Don’t Know)” by the Newsboys kept repeating in my head:

Lord I don’t know where all this is going
Or how it all works out
Lead me to peace that surpasses understanding
A peace beyond all doubt

The interesting thing is that I hadn’t heard that particular song for years, yet it came to me when I needed it most. This was the inspiration for the verse that is printed on Finn’s urn, Philippians 4:7.

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

The next couple of weeks after Finn was born was filled with questions. I felt tremendous guilt because I thought that I inadvertently did something that caused Finn’s death or didn’t go to the hospital soon enough. The preliminary autopsy results came back with no abnormalities, adding to my fear that I somehow failed to save my perfectly healthy baby from dying. Then, we got a call from the geneticist saying she had an explanation for Finn’s death, and we scheduled an office visit.

It was a long few days waiting for that meeting, but when it finally came, we got a completely unexpected explanation — Trisomy 9. It was quite shocking to discover that every cell in Finn’s body had this extra chromosome when he looked so perfectly formed. We learned his condition is always fatal, and that most babies with Trisomy 9 are miscarried in the first trimester.

It was then that Finn’s purpose began to sink in. At the doctor’s office laying on the exam table, I prayed to God that he would allow me to become pregnant and send me a baby to love. God answered my prayer in a way I never imagined. I did get pregnant (after 2.5 years of no success on our own), and God sent me a baby to love, but he was not designed for Earth. There was nothing on Earth that could have sustained him. He wasn’t meant to survive here for a reason. He had a purpose in heaven.

God allowed me to experience the joy of another pregnancy and loving another child. It wasn’t overshadowed by the knowledge my baby was going to die until the very end. And through Finn’s death, my faith has been strengthened beyond what it ever has ever been. It has given me a platform to share the love of Christ, celebrate the meaning every unborn life has, help other grieving parents, and share information that can help people understand grief, and even save other babies. I don’t yet know what Finn’s heavenly purpose is, but the ripple he has created so far on Earth had been larger than I could have imagined and I know it is because God is working this for our good.

The biggest difference between grieving with God is that I grieve with the hope that I will see Finn again, healthy and whole, when I join him in heaven one day. While this doesn’t negate the need to grieve or change the fact that I miss him or wish the outcome could have been different, it does bring me great comfort to know he is in a place more beautiful than I can imagine, where there is no suffering.

Infant Loss, Stillbirth

As it turns out, March is Trisomy Awareness Month. I’ll try to post some facts on it even though I’m still trying to learn more about it myself, with my very rusty knowledge from college biology.

Chromosomes are thread-like structures located in the nucleus of a cell. They are made of protein specially structured to hold tightly coiled DNA. The DNA is what contains our genes. Humans have 23 pairs of chromosomes, a copy from each parent, resulting in 46 total. Trisomy occurs when there are three copies of a particular chromosome. Finn had three copies of chromosome 9.

The most severe chromosome disorders are numerical abnormalities caused by the loss or gain of whole chromosomes, which can affect thousands of genes. The chromosomes are numbered from largest to smallest in size (1 to 22). The largest chromosomes contain the most genes. With Trisomy, the smaller the chromosome number impacted, the more severe the effect on development, since more genes are impacted. Half of all miscarriages are due to chromosomal abnormalities. Numerical abnormalities are sporadic, and they do not usually recur in subsequent pregnancies. Most Trisomy 9 babies are miscarried in the first trimester, so it is difficult to estimate how many babies are affected and there isn’t a lot of information on it. Finn was a strong little baby to survive to late preterm (35 weeks)!

A karyotype describes the chromosome count that an organism has. A normal human karyotype contains 22 pairs of autosomal chromosomes and one pair of sex chromosomes (allosomes), making 46 total chromosomes. Normal karyotypes for females contain two X chromosomes and are denoted 46,XX; males have both an X and a Y chromosome which is denoted 46,XY. Since Finn was a boy with Trisomy 9 , his karyotype would be (47, XY, +9), indicating there were 47 total chromosomes with an extra 9th chromosome.

 

Infant Loss, Stillbirth

After Finn died, a chromosomal microarray test was done to check for genetic problems. Today we met with the geneticist, and we now know the cause of our baby’s death. Finn had a condition called Trisomy 9, meaning he had three copies of chromesome 9. There are three different variations of this disorder, and Finn had full trisomy 9, meaning that all of the cells in his body and placenta had three copies of chromosome 9. Full trisomy 9 is always fatal and most babies with this issue are miscarried in the first trimester. Those that are born alive typically die in the first week of life. Finn was stillborn at 35 weeks, 1 day gestation.

Common genetic testing done during pregnancy only tests risk for the more common trisomies – 21 (Down Syndrome), 18, and 13. An amnio or CVS could have detected it, but those procedures are invasive and usually only done in when an issue is suspected since they carry a slight risk of miscarriage. In our case, the pregnancy had the appearance of being perfectly normal, and while trisomy usually causes anatomical abnormalities, the 18-week anatomy scan was normal, as was the preliminary autopsy report. Finn also had no distinct appearance markers that are typical of a chromosomal disorder. He was really quite the anomaly. Trisomy 9 usually occurs by random chance. We are currently undergoing genetic testing to determine if either of us have any chromosomal abnormalties that would give us a higher than normal risk of having a child with this condition.

Babies with full Trisomy 9 have numerous physical and mental abnormalities and are medically described as “incompatible with life”, but we know Finn was designed by a God who never meant his body for this Earth. From the moment he was knitted together in my womb, God had another plan to bring him straight into heaven. Still yet, even though the odds were against him in every way, our gracious God designed this baby I had prayed so long for in such as way to allow me 246 days to enjoy his presence in the womb before his body stopped working and his soul departed. He took Finn in the womb so we did not have to see him suffer and die in a world he wasn’t designed for. He allowed me the peaceful experience giving birth to this baby naturally, to see him enter the world and immediately be placed on my chest, and to cut his umbilical cord. This may not seem like a big deal to some, but this was one of my biggest hopes for this pregnancy after my previous c-section. He allowed me to see my son’s face and hold him, to have memories and photos of him always until we meet him again in heaven.

Psalm 139:13-16

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

 

God is good, and I will praise Him in this storm.

Finn, Grief, Infant Loss, Stillbirth

After waiting over two years to find we were expecting our much anticipated second baby, it seemed as though the hardest part was over. We had a seemingly normal pregnancy and healthy baby and were just counting down the days until we could meet him. Amidst the shock of discovering he was no longer alive, the excitement to bring this little person into the world, to see his face and features, to hold him and feel his little fingers wrapped around ours, to look at him and know we are forever changed because he exists, still remained. Saying hello while also saying goodbye is tough when we thought we would have a lifetime of memories. Bringing our son home in bronze cube instead of a car seat certainly wasn’t the plan. We are living in an alternate reality and figuring out how to move forward day by day with the help of God and our family and friends. I can only hope that we can do so in such a way to honor the memory of our son Finn.

Finn's Feet