By Amanda Martin
In 2001 when I was 22 and Wes was 24, we got married. I had recently become a Registered Nurse and Wes was in ministry. Once we started trying, we got pregnant fairly quickly and we were told we had twins. We believed we hit the lottery. Immediately we got on our knees and we thanked the Lord, and prayed for the outcome to be what He wanted. We had no idea how that would play out.
When we found out we had twins, of course we told everyone. Around the 22-24 week of pregnancy, they did a routine ultrasound and something was not right. The girls’ brains showed lots of fluid. At the time we did not realize how extreme that was – it was our first pregnancy and we were so young. Even though I was a registered nurse, I did not work on the pregnancy or the NICU floor, and I just didn’t realize. Because of this new concern, they increased the frequency of the ultrasounds. In my mind, my worse-case scenario was “they will need shunts in their brains, but we can handle this, that can be done once they are born.”
With every doctor visit, measurements showed that the fluid on their brains continued to rise. I began to dread the doctor visits. People around us wanted to celebrate our pregnancy. I had such mixed emotions: it was hard to celebrate; I felt helpless and powerless – pulled along by this pregnancy.
On one particular doctor visit Wes was not able to attend, therefore, my mother-in-law went in his place. This doctor was new, a kind of second opinion, and I assume he felt I didn’t really understand the situation. Paraphrased, his advice was, “This is not a good situation. You will have severely disabled children. Have you considered aborting them?”
I was shocked and irritated. We were living far away from our family. It was just too much to process. I replied testily to the doctor, “that is not an option!” But he was not done educating me. He snapped back, “Why do this? It is pointless. You’re wasting your time and you’re wasting the resources of your body on these children.” My poor mother-in-law was completely shocked; I was traumatized, angry, and super offended. He left the room, and I burst into tears.
We never returned to see that doctor. But we were in an unyielding free fall between our belief that God works miracles and the relentless developmental updates of my pregnancy.
During this time, I was researching these symptoms like crazy, which only made me more depressed. It left me feeling hopeless and quite frankly downright intimidated by the mountain we were facing. Soon I discovered Facebook communities of Trisomy 13 and other similar online support groups. One day my thoughts and feelings finally bubbled to the surface: I looked at Wes, and I confessed through tears and gaps of breath, “I don’t feel equipped for this. I’m terrified.”
And yet through all this, it never occurred to me that my girls would not live. We were in this for the long-term. My expectation was that Wes and I would be raising twins with severe medical and developmental disabilities.
Everything happened at breakneck speed. By the time we reach 33 weeks, the doctor wanted to do a C-section and take the girls a little early, while they were still strong enough to live outside the womb. The doctor scheduled the surgery for October 31 and I said “oh no, let’s do November 1, 2006.” The day was set.
Our family and our pastoral team were at the hospital, praying while the C-section was happening. We were holding out for a last-minute miracle, and we were desperate.
Our wonderful Neuropediatric specialist spoke to us before the surgery to ask the most difficult questions: would there be a Do-Not-Resuscitate (DNR) if the girls made it through delivery but were not breathing? This is a decision each family must make individually; this can only be made with the Holy Spirit’s help and the wisdom that you have at the moment. God‘s grace takes the best that we offer in our weakness and through our humility. He uses it for His glory. We agreed: either God was going to do the full healing that we had asked for or God was going to take our babies to heaven right then. We left it in God‘s hands and told the doctor we would have a DNR for the delivery and birth. Honestly, we still felt we didn’t know what to expect up to the moment they were born.
To say that the C-section surgery room was intense would be an understatement. Our main prayer was that they would be delivered breathing – we wanted our girls! And in God‘s Sovereign Grace, our babies were born breathing. A huge weight was lifted from us. Charli and Ali had made the first hurdle!
As soon as I saw my baby girls, I felt instant peace. All my fears and concerns melted away. My eyes were on them and my feelings of love were so overwhelming. We were so thankful they were alive and breathing. We held them and felt such gratitude to God for giving us this time with our girls. Everything leading up to this made it totally worth holding them in our arms.
As expected, they were brought to the NICU, receiving their nutrition through a feeding tube while I was supposed to be recovering from a C-section. We counted the time spent with our baby in hours and half days. We knew hour by hour there was no guarantee they would continue to live. We later learned that as they grew in my womb, their brains had not developed normally. Essentially, they only had a brain stem. They could possibly live for up to one year. But two days after birth Charli’s heart rate began dropping in the NICU. In spite of recovering from a C-Section, when we were told of Charli’s change in medical status, I walked up two flights of stairs to get to her faster than the elevator could deliver us. We discovered early on that if we held her, her heart rate would return to normal. The moment that we held Charli in our arms, we knew she was ours, and we fiercely protected every aspect of the quality of her life. We were so insistent to continually be in the NICU that they found a large private room off the NICU with two rocking chairs; that room became ours during this precious time with our girls.
It was difficult to watch Charli struggle with the seizures that came; it was hard for her to recover. But we held her the entire time through it all. She died within five days of being born.
Ali lived another 15 days. What would become the last two days of her life, I asserted my rights as a Momma and declared that I was taking our Ali down to my hospital room. We took her off oxygen and she lay on my chest continually. On the second night, she died in my arms, while her mommy was taking care of her.
After both girls passed away, I thanked the Lord for this opportunity to love these eternal souls. It was way worth it. I would do it all over again, just to have another two weeks with them. It changed my heart as a mother.
Facing the unknown was so scary before they were born, but after I saw them and I held them, all of that floated away. We created eternal souls; it’s just a matter of time before we see them again. Every single mother I’ve spoken to who had children with similar outcomes have said the same thing: we are so grateful for the time we had with our precious children, and we would do it all over again to spend more time with them.
Was there an emotional and spiritual fallout from this experience? Absolutely. As I looked back over that season, I now realize the spiritual and emotional tsunami we were facing. It was so much larger than ourselves. The year 2007 was a flurry of busyness: going on an impromptu ski trip shortly after my C-section, dismantling a baby room, selling a house, buying a fixer-upper, regularly working six 12-hours nursing shifts and having three missionary students as roommates. Did I mention we became pregnant with Owen in March, 2007? In October 2007, we held an open house of our newly refurbished home and that was when all our family discovered I was seven months pregnant. In my mind, I was protecting the memory of our daughters and assuaging the guilt I felt for “moving on” from them. I was also protecting the baby in my womb, and I was protecting my heart. It was at the six-month mark of development that we knew our Owen had the proper brain and ventricle development that our girls had lacked. Owen was born within two weeks of the one-year anniversary of our precious Charli and Ali.
Our story reminds us of the eternal souls that God creates within a womb. Currently in Missouri, abortion is legal for all nine months of pregnancy and certainly for any “fetal anomaly”. Doctors can legally push parents with the same words I heard, “Why are you doing this? This is pointless! You are wasting your time and the health of your body.”
Our girls certainly had fetal anomalies but they lived a precious 5 and 15 days, and they changed our lives forever. It gave us the opportunity to hold and love our babies, even if only for a brief time. Like other parents with a similar lived experience, we have no regrets. Our children have made us more compassionate and more grateful for God’s gift of Life.
A Trisomy diagnosis is not a death sentence for an unborn baby. They can and do live outside the womb. Even the American Academy of Pediatrics has now issued guidelines for caring for these children and requiring care be administered.
I have learned that as parents we are given an opportunity to steward what God has given us for as long as He decides. My prayer is our story will resonate with other hurting parents and remind us that all life is precious.
