How it all began…
How it all began.
My husband Dave and I got married the summer of 2013. We were happy to hold off on starting a family so that we could enjoy each other’s company, establish our careers, and build a home that would give little humans a safe place to grow up in. We are quite the planners, and often fall in to the trap of thinking that we know best for ourselves. While it seemed logical to get our lives ready for kids, the timing that we had in mind was not what God had in store.
We “planned” for the new addition to our family for spring 2018. That would be perfect, we thought. We figured we’d start early since it wasn’t likely to happen our first attemptFor two people who are medically healthy and great at making a plan and sticking to it, it took a lot longer than we expected! By March 2018, we had just decided to take a break from things for our mental health. In April 2018 we found out we were pregnant.
We went for our first ultrasound at 7 weeks, and the doctor took a while poking around because there was more than expected to look at. Twins run in both of our families, and we both had a feeling that there could be two humans developing inside of me, so it brought us smiles when we were told the news that there were two. I’ve always loved the idea of twins because one pregnancy for two babies sounded like a great deal! How can you pass up a bargain like that?
If you look really closely, you can see two black bean shaped things…
Dave and I lay in bed at night and discussed how we were going to handle twins. We thought about where we’d put their cribs, how nice it would be for our kids to grow up with a sibling from birth. How I’d get to pop out two babies while only dealing with the morning sickness once. We discussed how we would tell our friends and family. We looked forward to our 10 week ultrasound. Thankfully, we both went together, because what we saw was saddening: There was only one heartbeat.
The doctor said that this can happen with twins especially early on. The loss of this twin was disheartening. We had always dreamed of having twins, but we were thankful for the life of our surviving baby. I had bloodwork done and then at 12 weeks I got a phone call from the doctor. He explained that he might have an explanation for why one of the babies didn’t make it. There were some chromosomal abnormalities in the bloodwork. “Trisomy 13”. Since both babies were still in my womb at the time of the bloodwork, there was no way to know which one it was. He said it made a lot of sense that the one stopped growing because that’s typically what happens with this disorder - most end in miscarriage.
We were set up to meet with a geneticist to review the results and get another ultrasound. During the meeting, the geneticist said that as soon as the lab technicians learned that this was a multiple pregnancy, they said the chromosomal abnormality must be the reason one didn’t make it, but that it would be wise to do an ultrasound to check things. During this ultrasound, it wouldn’t be accurate to say my worst fears were confirmed, because in my head, I had no fears. I thought that we were just going to get confirmation that the baby that didn’t make it had trisomy 13, a) because this was a logical explanation, and b) because this is what the geneticist explained to me. However, in the ultrasound room, things were different.
They did an external ultrasound to look more closely at our surviving baby, but couldn’t see enough, so went in internally. Once they were in, things got quiet. They took a bunch of screenshots and proceeded to tell me that there was no division of hemispheres in the brain. They couldn’t see 4 chambers in the heart. The baby had a cleft lip. All of these are major signs of Trisomy 13.
CVS Procedure
While we were told that the ultrasound results indicated that the surviving baby had Trisomy 13, the only way to tell for sure at this time in the pregnancy would be through a CVS procedure (Chorionic villus sampling). During a CVS procedure, they take a sample of placental tissue for testing. The sample can be taken through the cervix (transcervical) or the abdominal wall (transabdominal). We set up the appointment as per the geneticist’s advice.
The CVS procedure went smoothly. Recovery was more challenging. Every bump in the road on the way home caused pain to surge through my body. Of course the way we drove home was full of roadwork that day, pothole galore!
Ethical Dilemma: Trisomy 13
On Tuesday June 18th, 2018 we received the phone call that our baby had Trisomy 13. That 37% chance had just turned into 100%. Trisomy 13 is a debilitating chromosomal disorder, affecting the brain, organs, physical and cognitive development. There is no cure. It is described as “incompatible with life”. It was unlikely that this child would make it through the pregnancy, through the birth, and if it made it past the first few hours or days, best case scenario would be a child at the developmental age of a 3 month old for the rest of its life. Unable to sit up, talk, walk, eat, express feelings. Best case.
What I am about to write is purely to share my thought process and my journey as we went through this difficult time. I hope it can help one person who is put in this position. I hope it opens your eyes to a new perspective. Please know that before learning about Trisomy 13, and before actually being put in this position, I had different views (as you may too). My gut reaction was to pray for a miracle or a miscarriage. Who prays for a miscarriage after praying for a child?! I never thought I would be in that boat, but the thought of carrying a baby that would likely not be able to make it the full 9 months was devastating. I was just praying that God would make my decision for me, because I didn’t want to choose. However, after thinking, praying, reading the Bible, and discussing with my husband, my thoughts changed.
For the 12 months prior to getting pregnant, we prayed regularly for a healthy pregnancy (what we like to call prayerful planning). We had prayed fervently over these past few weeks for one glimmer of hope that would give us a sign to continue the pregnancy. We also had some dear friends and family praying for us. We believe that God has given us the medical expertise/technology for a reason. We believed that God would give us a sign of hope to hold on to if we should continue the pregnancy. Over the two intense weeks of prayer (which sounds like a short time but felt like a lifetime), we had 3 doctors appointments. Each one brought worse news than the one before. We were told that the surviving baby had a central cleft palate, no corpus callosum, and a heart that was not healthy. The doctor told us that if the issues were only the heart and severe cleft palate, those can be fixed with surgery, but where the brain is concerned, there is no fixing that.
I had faith that God could work a miracle, and still believe that God can work miracles. He could heal this baby. My faith was not challenged in that regard. My question became “would God perform a miracle”? I knew He could, but wasn’t sure if he would. I am learning more about prayer lately and how important it is to be in line with God’s will in our prayers. I got to a point in 2018 when I realized that it was not God’s will to heal this child. Our suffering comes so that our faith may result in praise, glory, and honor when Jesus Christ is revealed (1 Peter 1:7). I have a feeling in my soul that I am here on this earth to glorify God. This means even in the toughest times, my purpose is to be challenged and come out stronger, changed and refined in order to reflect God’s work.
Something that helped me to make my decision was Proverbs 16:2-4. It reminds us that motives are weighed by the Lord. Commit to the Lord whatever you do, and He will establish your plans. I knelt in prayer as I committed this decision to God. My motive was to trust and glorify God. If God weighed my motives, he would know my heart was in the right place. I committed my decision to Him.
I kept hearing over and over again “Be Still”. When I looked this up, I found Psalm 46:10 which says, Be still and know that I am God. I used to think this meant to be quiet, rest or to breathe, but when I looked further in to the Hebrew meaning, I found: “be weak, abandon, cease, let go, release, surrender”. The one that stuck out to me was “cease fighting a battle you can’t win”.
I was unable to win this fight for my child.
I chose to surrender rather than fight to the point of defeat.
We felt God calling us to end the pregnancy despite us wanting a child so badly. While this may sound insensitive or lacking in faith, I felt a strong sense of peace and confirmation that this was the right decision. Our motives were to do what God wanted, to glorify Him in our suffering. Even though you may not agree or understand, I request that you respect my decision and the means to get to that point. Trust me, it was not easy. Who would end a pregnancy when they desperately want a child?
The view from the hospital floor
D&C
At 15 weeks I had a D&C procedure. Both babies were removed from my womb, a boy and a girl. A week later, due to medical complications, I had to have the same procedure done again to remove lingering placental tissue. This put me in the hospital when I should have been on a flight to Greece for my best friend’s wedding at which I was supposed to be a bridesmaid. It was a devastating time and felt like the knife in my stomach was being twisted after I thought everything was over.
We will forever remember December 2018 as the month our twins would have been born, and each December will be a reminder.
If you find yourself having to endure a D&C, do not go through this experience alone. Scheduling a D&C when you’ve been dreaming of having a baby is a dreadful experience to go through. Make sure you have someone to not only transport you to and from your procedure, but also to provide moral support. I have detailed a few tips here for those of you who may need.
