“I am not going to sugar coat anything. There is a lot that is wrong with your baby. It isn’t going to make it. I just want to be honest with you.”
Those were the first words we heard from a doctor after going in for our ultrasound at 19 weeks. To be honest, I wasn’t completely surprised (I will explain more about that later on), but it was none-the-less crushing. Devastating. Heart-Breaking.
I began to bawl as the doctor started talking, because I knew what was coming. I had read all of the stories on the internet that talk about those ultrasounds of happy, unsuspecting women that go in ready to see their first sights of their healthy, growing baby and find out whether they will be leaving to pick out pink or blue outfits and nursery accents. Most of them, like myself, get through the first part of the ultrasound with a technician who goes through the motions of taking measurements and snapshots of all of their baby’s organs so you can have confirmation that your baby is growing and developing well. My technician wasn’t very talkative, but I didn’t let that get to me. Maybe not everyone likes to talk as much as I do. She did tell me that the baby was laying in a position that was making it hard for her to get a clear view of the arm and the face. She was so calm about it that I didn’t think that was anything but normal. I was really blessed that this was my first pregnancy and didn’t have any other experience to compare it to. I later found out that this was nothing close to normal.
After the tech wrapped up the measurements, she brought my husband back and told us she would be with us in a minute to reveal the gender. She was so calm and it seemed so normal that I thought all of my fears of having a baby that would struggle through life were unwarranted. My husband and I spent 10 minutes waiting for her to come back and we laughed and joked and even tried to look for any notes the tech had left that might reveal the gender to us sooner.
And then the doctor came in.
This is the point in all of those internet stories where the happy moms realize something is wrong. It was no different for me. The doctor told me there were a few things he wanted to look at and we went through the ultra sound process again. I knew this was it and started bracing myself for the news. Maybe it was Downs Syndrome. Maybe it was club feet. Maybe there was an organ that didn’t seem to be developing properly. These were all individual outcomes I had thought and prayed about and felt confident that the Lord was preparing me to handle for our child.
Turns out we wouldn’t find out for a few days what was going on. The Doctor gave us his prognosis: Death. No explanation or syndrome. Just a complete confidence that our baby wouldn’t make it.
My husband and I both bawled for a good while in the small ultrasound room before we were ushered to go meet with my OB. My OB gave us a little more detail. No stomach. Underdeveloped. Awkward position. I can’t be sure, but I think that was all she told us at the moment. It was all a blur. I do know that I asked her “Do babies with these complications ever make it? Can these things be fixed after they are born?” She looked at us and I could tell she was heartbroken as well. “No” she said. “With this many complications, they never make it.”
My OB did tell us that she would set us up with a high-risk pregnancy specialist who could possibly give us a better diagnosis. We saw many doctors over the next week.
A high risk pregnancy specialist, gave us a more clear laundry list of problems with our sweet baby:
Calcifications in the lungs and kidney’s, indicating failure
Intestines which had developed, but been punctured and then exploded
Club feet & hands
Swelling in the skin that was increasing day by day due to the kidney failure (without the ability to remove waste through the intestines or the kidneys, all the waste was being absorbed in to the skin and causing swelling
Heart issues (identified by a cardiologist)
An extreme case of kyphosis which led the spine to form so that our baby’s head was bent backwards touching it’s back and the feet were over the head.
We also had an MRI done just incase they could confirm that any of these ultrasound observations might not be as bad as they thought. But they were worse. We met with a pediatric surgeon at Texas Children’s Hospital, one of the absolute best in the country to see what types of surgeries we needed to expect when our baby girl was born. This is where it gets really grim. My husband and I are very pro-life. We both knew that the weak heart beating inside of me was a life and she was created by God for a purpose. This is what makes the news we were about to hear all the more hard.
The pediatric surgeon told us that there were surgeries to fix a majority of her issues. But the intensity of the surgeries and the number of surgeries that she would have to go through if she did make it to term, would likely kill her. If it didn’t kill her, she would be tethered to life support forever.
Now, most of the doctors didn’t tell us to terminate or continue our pregnancy. This wasn’t out of courtesy to let us come to our own decision, but because they were already 100% certain that our girl would never make it no matter what we decided to do. But the pediatric surgeon was a little more straight forward. He told us that we were essentially having to decide if we were going to take our child off life support now, or later.
This is where I backtrack a bit and fill you in on all of the things that happened over the course of 2015 that led us to this point. In January, I had a conversation with a dear friend that led me to realize that my faith had never been tested. I had never struggled or suffered or had to really trust in God to provide or truly comfort me. So did I really have the strong faith that I grew up thinking I had?
I began to pray that God would help me know that my faith was solid. To give me a chance to lean on Him as my provider and comforter.
May 2015: My husband and I sat on our bed as we watched water creep in to our house for 6 hours. Memorial Day Weekend, Houston got a lot of water and our house was one of the hundreds that were affected. 1 foot of water in our house. The majority of our furniture ruined. And a time line of being out of our house for 8-10 weeks. That was 6 months ago. I told my husband that this was a time where I felt like God was telling me “You think you are truly trusting in me and putting me as your first priority? Let’s see how you feel when I take away some (not even all!) of your possessions.” Point taken God. My possessions had been a much higher priority for me than my relationship or giving to God.
July 2015: We found out that we were pregnant! For us this was unexpected. And honestly terrifying. And also awkward because we were living with my parents while we were displaced from our home… None the less, we didn’t feel ready or capable to be parents. At this point I felt another tug from God telling me that I wasn’t putting my trust in Him. If He said it was time to have kids, it was time to have kids. It took a little bit, but both my husband and I got on board. We were going to be parents. I didn’t handle all of the excitement how I always expected I would when this moment came. I didn’t put any announcements on Social Media. At the time I thought God was telling me to hold off on big announcements to protect the feelings of friends who hadn’t shared that they were struggling with infertility. I now know that this was to protect me from having to see estranged Facebook friends and explain to them that there was no baby. I also refused to buy maternity or baby clothes. I thought I was just waiting till I found out the gender, or trying to be budget conscious since we were in the middle of repairing our house. Now I know this was to protect me from having to make painful returns or store away boxes of clothes to go unused till some unknown date. We also didn’t have a house so there was no nursery to decorate. No decorations that we would later have to take down.
All protections from God.
October 2015: My husband sat me down on a Saturday afternoon and told me that he lost his job. He had already started to scan the job market for new opportunities, knowing that the job he had started just 7 months ago was just not the right fit. So while this wasn’t as devastating as losing a great job that you love, it was scary knowing that we had dipped in to our savings to pay for a few extra things in the fixing of our flooded house and then found out about a surprise baby (which I heard were expensive). None of this was worrisome until we became a one income family. Who knows how long this will last. My husband is a smart guy (really, the smartest. He did all of my math homework through high school and college without ever needing a calculator.) and he will find another job in time. This was just another instance where I felt that God was calling on us to trust him as a provider. But I told God after this unexpected life event, “ K God! I got it! No more surprises or struggles. This has been a great lesson and I have learned to trust you. Let’s call it good ok?”
November 2, 2015: Bomb dropped. My baby, which I now realize was never mine to begin with, was never going to be coming home with me.
I spent that day reflecting on all of the prayers we prayed over the last 5 months for our child.
We prayed that she would know Jesus and that her salvation would be secure.
We prayed that she would be healthy.
We prayed that she would know that she was so very loved by her Earthly parents.
We prayed that she would know that she was the most important thing to her Heavenly Father.
We also prayed that God would guide us in lessons to teach her as she grew.
There was no message that I received more clearly than the need to teach our child about suffering. God was showing me through many instances that it would be important for our family to understand that suffering should be used to bring glory to God. Keeping yourself focused on God and His purpose for your suffering is such a fantastic way to show others that His love is true and unfailing. God doesn’t bring suffering upon you to be cruel. Sometimes suffering comes as a way to bring about discipline, because he is a good, good Father and good Fathers discipline you because they love you. And sometimes He brings suffering to build your strength and grow you closer to Him.
“We boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.” - Romans 5: 2-4
As we went through the week long series of appointment after appointment, I realized that the lesson I thought God was preparing me to teach my child on suffering, was really God teaching me.
It was a devastating decision. We agonized and prayed over it for days. We sought wisdom from couples in our church who are wiser than we are. We prayed with our parents and friends and strangers who showed us kindness during our doctors visits. After all of our prayers and discussions we didn’t feel like we were getting a clear answer from God on how to proceed.
A good friend had explained it to us like this: At every decision point in our lives we are faced with at least two paths. Most times, we can clearly identify the path that God would like us to choose. Sometimes it is a little less clear. Sometimes you don’t get a clear answer and you have to have faith that in whichever path you choose, God will be present. You also have to trust that God is a good God and a big God and he can adjust your path if you misstep, so long as you are calling out to him every step of the way.
What really made our decision is that the pediatric surgeon told us that our daughter was already likely in pain. We couldn’t bear the thought of keeping her alive just to let another organ explode or to find out what happens when her skin got too swollen and have that cause her more pain.
We had only been able to process this for a week. In the state of Texas, the time limit to terminate a pregnancy up to 20 weeks. We found out that there were issues with our sweet girl at 18 weeks and 6 days and we called our OB to talk about termination after 5 days of doctors appointments (19 weeks and 5 days). Our OB said that there was only one Doctor in Houston that she would feel comfortable sending us to with our conditions. We had a small chance that this Doctor would be in town or that he could fit us in with our tight time frame. We were confident that if there was even a small snag, that would be God telling us to keep our girl and that she wasn’t hurting.
They offered us the first appointment the very next day.
I had spent hours searching the internet for stories like mine. Mothers who loved and desired their babies and were told that there was something that would make their child “incompatible with life”. Mothers who had to choose to continue to carry the baby or terminate the pregnancy. These stories are beautiful and touching and they most always end in heartbreak for the parents. Out of all of the mothers who’s words I read about their decisions to carry, most all of them seemed to have gotten some diagnosis. Some understanding of what they were up against and their odds. Maybe that made it easier to find hope. Maybe they didn’t have to see their child twisted in to some unnatural yoga position that was slowly tearing it apart. Maybe they did. But they didn’t include those details in to their stories.
All of their stories explained how they were able to feel their child kicking and moving around in the womb as they got bigger. Their stories talked about how they could see their child on the ultrasounds sucking their thumbs or even smiling. I think reading these stories were the only times I felt angry and alone. I would never see my child move. Her skeletal issues or her brain function didn’t allow it, she was already paralyzed. I would never see my child smile, or even get a clear picture of her face. Her face was twisted around so it was smashed in to the side of my uterus. How come these mothers, who also faced impending death for their kids, all got to seem like they were spending time watching their child grow up a bit? They all seem like they got to see a child that was still safe and protected in the womb. A child that had zero odds of making it in the outside world, but within their mothers, they were thriving. Why couldn’t my child even survive in my womb? The place where she was supposed to be the safest and most protected.
Even though the doctors will tell you that you couldn’t have done anything to change the outcome, it is still hard not to be frustrated with yourself and with God. I believe that is where I distrust God the most at the moment. I feel like He must not have made me correctly. If He had, why would my body be such a danger zone for my child?
But God did create me perfectly. He created me as just perfectly for a purpose. And He created our daughter, Elizabeth Faith, perfectly for a purpose. I believe her purpose was to give me the strength and ability to share her story and be equipped to minister to women and families who will struggle with these decisions in the future.
On November, 9, 2015, God was with my husband and I as we let Elizabeth go. She was out of pain. She was with Jesus. And she was fully healed. “For no one is cast off by the Lord forever. Though He brings grief, He will show compassion.
So great is His unfailing love. For He does not willingly bring affliction or grief to anyone.” - Lamentations 3: 31-33.
That verse was a part of my daily reading on November 9, 2015. Isn’t God cool? He truly is in everything.
He clearly brought the events my life over the past year, which I thought was falling apart, in to an incredible story for His glory.
If we hadn’t been displaced from our house in May, we wouldn’t have been living with my parents in November and gotten the extra support and love through the darkest time of our lives. If my husband hadn’t lost his job, he would have been stuck trying to check in at work and make all of our doctors appointments, two locations that were easily an hour a part. He wouldn’t have been able to be fully focused on our family. If we had never gotten pregnant, we would have not experienced the love it is possible to have for another human. And we wouldn’t have had anything that would have drawn us as close to God as we are right now.
Remember to search for God in the struggles. These struggles are a chance to sing praises to His name. To draw others closer to Him. To let yourself be covered in the love and compassion He has for you.