Updated: Nov 21, 2022
We walked out of the hospital...
We walked through the hallways, leaving the hospital, and somehow, made our way to the parking lot. Feeling massively pregnant, I stepped into Brian's tall work truck. We just sat there for a moment. Devastated... without words. Hearts in the absolute gutter. And a 2 year old jumping around in the back seat. How were we going to navigate life; the needs of a 2 year old while being present for this new journey we were embarking on?
Face in hands. Tear stained cheeks. Brian in shock. We just sat there. Then I had a thought... I vaguely remember hearing of a woman in Pagosa with what I thought was a similar situation as us, just a couple years back. I looked up her number and just called her 😳. She answered. Yes, she did have a similar situation… Oh my heart 😭. We talked. She shared, and I felt a connection. I’m not alone on this journey no pregnant mom should every have to be on. And one we don't really ever talk about in pregnancies. Two devastated mom hearts connected perfectly. She understood how I felt, in a way nobody else could. She later sent us a little doll that had a heartbeat recorder in it. I will adore that woman till the day I die, for answering her phone, meeting me in that moment and for talking to me when I really needed someone to connect with.
At our next prenatal visit,
We'd decided that we could "ask" to stay pregnant (Ha ha- of course we could - it's my body and our baby. I'm sure glad we realized this.) We wanted as much time with our baby as possible. So prenatal care looked like weekly visits with the MFM (maternal fetal medicine
doctors). When we had out first prenatal visit with them, we realized they did all the normal things, but then informed us we'd be doing an ultrasound as well. Well, that was a lovely blessing; we'd be able to see our baby again, but now through a different lense... We recorded the little one's heartbeat at that first visit. We also decided we'd like tofind out the gender of the baby, so we could name her & start making memories. We were to have a little girl... my heart exploded. Brian said, somehow that made it harder, that she was a girl, and that he couldn't protect or fix things for her. He then quickly said, it would've been equally as hard if it were a baby boy... . Somehow this ultrasound also held more gravity, just the visual proof she was still alive (even though she was going to die... ). What a weird way to feel. There she was... it was so comforting to see her, especially since I didn’t know how many prenatal visits we’d have with her.
Having a gender helped us start creating more of a concrete reality in our family for our daughter, it was different that what we'd expected or imagined, but this would be the beginning of creating a little space in our lives where our little one would nestle in.
We'd call this space hers.
After the ultrasound we had a slew of visits with specialists, that had been scheduled for us. We met with each separately, and they would explain what Trisomy 18 was, what the ramifications were, and what we were to expect on every level, each from a different specialty's perspective.
We got a deep lesson on genetics. Yes, some was a review, but the Trisomy discussion was new for both of us. To start with, humans have 23 sets of chromosomes (1 from each of our parents). A "Trisomy" diagnosis means that there are 3 genes instead of 2, on one of the sets (allele). Trisomy can happen on any set, but most trisomy babies miscarry early in the pregnancy. The ones that typically carry into pregnancy are Trisomy 13, 18, & 21. In our case, the Trisomy was located on the 18th set (that's why they call it Trisomy 18). This is what they are testing for when they offer the (more & more) common Cell-free DNA test offered at 10 weeks of pregnancy. There are a ton other genetic/physical things that can be "wrong" with the baby, but this is the most common thing offered (more on how I feel about all this later 😉).
Trisomy 18, also called Edward's syndrome
So, to reiterate, the 18th set of genes actually had 3, not 2. Then to complicate things further, the effect can be in in EVERY CELL of our body (Full Trisomy), or peppered throughout (Mosaic Trisomy). Out little one had Full Trisomy, unfortunately. Sometimes this is noted as FT18 (full trisomy 18). Mosaic Trisomy kiddos have much better survival rates, often times living into adulthood, with physical and developmental delay in several areas.
Trisomy 13, also called Patau's syndrome
The extra gene, the "Trisomy" is on the 13th set. Very similar survival rates as Trisomy 18, different physical identifying markers, but more rare.
Trisomy 21, also called Down Syndrome
This is the most common Trisomy. The extra gene is located on the 21st set of genes. Down Syndrome has WAY better outcomes than Trisomy 18 or 13. Down Syndrome kiddos can live long into adulthood (some with limited assistance). I'm sure we all know a sweet person with Down Syndrome- so full of smiles and life! They do typically have some physical delays, developmental delays and increase rates of mild/severe heart abnormalities, hearing vision problems, among other things. These babies don't all survive birth or into adulthood due to severe physical impairment.
After Meeting With the Neonatologist, the Perinatologist, and the Child Life Specialist...
At the end of the day, we realized that every last drop of possible hope we may have had or were holding onto, had each been swept out the door that day, one at a time. Each time our hearts broke more and more, until we were stripped of any hope at all. This truly was not going well. The likelihood that we'd be taking out little one home from the hospital after birth was very small... We were advised that she'd probably die soon after birth, that is, if she didn't die in my belly before she was born. There are rare cases of Trisomy 18 babies living to see their 1-year birthday (typically with surgery). My question in my mind was, "Do we hold onto any of these those hopes?" "Do prepare our hearts for saying goodbye?" Where does this leave us in terms of processing, grieving, being pregnant... ?
Our little one had several physical problems, including an esophageal atresia (her throat disconnected before making its way to the stomach), which doesn’t matter while in utero since all baby needs comes through the umbilical cord. She also had a heart defect, which maybe could be repaired by surgery at birth, but was not recommended by any of the specialists we met with. Apparently most surgeons won't do heart surgery on Trisomy babies, but they are out there, (which none of the specialists told us). There were many other medical concerns... but the bottom line was, she had “Full trisomy 18, not mosaic (where the issues are scattered throughout the body), so there was an endless list of concerns.
Every cell of our little girl’s body was imperfect…
And these little ones usually have a hard time in surgery and it was a toss up whether she’d even survive the surgeries. Many of these little ones die from “forgetting to breathe” (their brain doesn't always tell their lungs to breath), so many parents don’t ever put their baby down when they are tiny, and have people come hold their baby all night long. We lived in rural Colorado, so if we made it past surgery and took her home, we’d be on a flight-for-life constantly up to Denver. The more we talked to the specialists, the more we were realizing that our picture of what we’d been imagining our family to look like was crashing down in front of us. 💔.
One of the specialists handed me a list of resources for us. She pointed to a specific resource, looked me in my eyes, paused, and said she REALLY recommended THIS one. The name of the organization was String of Pearls. She went on elaborate that they provide Perinatal Hospice services... (whatever that was). They specialize in supporting families that know they’re going to lose their baby before or shortly after birth. They help with birth plans, grief support, birth photography, cremation orchestration, and much more.
We left our day for visits, and what we could call, "The day of truth telling". We got all the black and white information about Trisomy 18 whether we wanted it or not (research says families do need the truth, no matter how hard it is to hear). I suppose we did need the black & white truth, but it was still hard, and a lot to process. I wanted to throw up... I wanted to be alone... I needed to cry, and also be a present mom, for Cord. I wish we had our home to go to, to hide, to sleep, to be... whatever I needed to be.
The next best thing was my sister's house in Golden (in Denver). She gave us our own space downstairs, and we made ourselves at home. Poor Phil, her new husband. They had just gotten married months before, and here we come, with this big heavy reality. He really was such an absolute trooper. And Leah was an absolute doll, and super helpful with all things...
I did call String of Pearls. I spoke with the most amazing woman. I'm not sure how I came across at that point in my journey, as I was still in shock (and I don't remember), but regardless, she just listened and listened... She didn't tell me more than I could handle. She offered when I asked... God bless her for eternity. She did ask for my mailing address, and said she was going to send a box of things that might be helpful. Sure. I gave her Leah's address. I sure was grateful to have someone to listen, affirm, help guide me, that was familiar with this whole crazy process of knowing you're going to lose your baby...
My journal entry from this time in our journey,
“We’re praying for a miracle”… What an odd statement. She is… This IS a miracle. If Jesus is sovereign over the woven intricacy of every situation (including this situation), then shouldn’t our prayers be “Jesus, your will be done… and help me be at peace with your will. Father, we know you are making beauty out of tears, please help us to hold your hand and trust as you guide us through this.”
Just processing through our thoughts as they come.... We are at peace with the fact that our little one has a genetic anomaly that affects EVERY cell in her body. Her existence, her life in my belly is a miracle. Her little angel dust that is bringing Brian and I so close is a miracle. This situation, that is bringing our family of friends to pour love over us, is beautiful. It is us, and our picture of “perfect” or “normal” that is now changing. We had an idea of what our little family was going to look like, and that picture is broken… pieces on the ground. And God had a different plan. A perfect plan. It’s us that has to change and mold to what he has in mind for us. Knowing him, he has a much better, fuller, richer idea for us.
It’s funny… The other day we were driving in the truck. We were listening to the Christian radio, and a gentleman says, “Often times when your foundation is being rocked, it’s God that’s doing the rocking”. If that's the case, I’m reassured. He’s got my hand, he wants better for us, and he’s got a plan. Glad He’s in charge of this roller coaster, and not me.
*not so say we shouldn’t pray for miracles… we’re just processing through this, trying to wrap our minds around all this"
"Love and grief come as a package deal. If you love, you will one day know sorrow" - David Kessler
How do you live life when you're not in your home town? When you don't know when your baby will be born. Whether your baby will die before birth, in your belly. Whether you'll be able to meet your baby alive (FYI, some people induce birth, just so they get to meet their baby alive). How were we supposed to not work for an unknown amount of time?