Real life Down Syndrome Awareness
We knew we were having twins from the first 8-week scan. It was a surprise pregnancy so you can imagine the added element of excitement finding out there were 2.
My pregnancy was fairly smooth. We did every test; each came back negative for all genetic defects. Thinking back now, I remember when we had gotten the DS specific test back negative and told our families, it was a unison, “thank God” from all of us.
I really hate that memory.
Our story is probably quite different than most. We did not find out that Allie had Down Syndrome until she was 18 months old.
Of our 3 children Allie is the only one that I was not considered “advanced maternal age”. We chose not to have any testing done for several reasons. First- we would not have considered termination if we found out there were any issues. Second- I had heard of too many people who had false positives and spent their pregnancy worrying. I wanted to enjoy every minute of being pregnant. And third- I really never thought it would happen.
Teya’s first months I remember only in fragments. Often not chronologically, but heartfelt.
My husband’s voice interrupts my anxiety as I lay on the operating table; I cannot feel anything, although I am aware of the surgeon tending to my wound.
Our second tiny miracle is introduced to our world for the first time. “She has my grandma’s almond eyes.” I hear the smile in her daddy’s voice, despite the stress of her arrival five weeks before our scheduled c-section.
This moment is interrupted by the doctor, who is suddenly and uncomfortably leaning over the table. He looks at me awkwardly; quite emotionlessly, he says, “There is never an easy time to say this, so you might as well know now; your baby has signs of having Down syndrome.”
Caleb was a surprise all the way around. Going back late summer 2006, when I hadn’t been feeling quite right. “I think I’ll buy a pregnancy test”, I said to David, my husband. He outright laughed. We had been told by my OB that I was really not able to get pregnant. Our daughter was 17 years old, and looking at graduating soon and going off to college.
The next day, I sat in the bathroom, stunned.
Down Syndrome, Hydrops, Duodenal Atresia, and a Heart Condition means that the odds were stacked against her from the beginning, but Vera is a fighter.
Vera’s story is amazing, and will likely bring a tear to your eyes as you read. I have shared another story on the blog about hydrops and unfortunately, many babies with this condition don’t make it, but, Vera did and so did Caleb. God sometimes chooses to allow some of these beautiful souls to remain with us here but takes others to heaven much too early. Vera’s mom tells us about what she went through just trying to get her sweet girl here, and her shock at suggestions that she should terminate her pregnancy because of Down Syndrome.
We did a gender reveal at our daughter Lila’s second birthday party! We found out that we were having another girl and we were very excited! A few days later I got a call from my OB telling me that she was so sorry but there were markers for Down syndrome in my blood. Why was she sorry? She acted like we were losing our child the way she delivered the news of the possible DS diagnosis. Of course we were nervous, anxious, and confused.
She told me I needed to get a “special” ultrasound at another hospital. The doctor at the other hospital was AWFUL. He kept trying to push an amniocentesis and I told him it was too invasive and there was a chance of miscarriage and that it did not matter, she was our child. He asked if I knew anything about “the Down syndrome” and I told him I would like more information. He googles it and circles the face of a sweet young boy with Down syndrome and says this is what “they” look like. “Have you ever seen them?” I could not believe how ignorant and unprofessional this so called doctor was. He told me that the divorce rate was high and our 2 year old was likely to be depressed and that we had a short window to take care of “it”. I said take care of what?! This is our child! God entrusted us with Vera and we would never harm her! It broke our hearts that a Down syndrome diagnosis was delivered with such negativity!
We decided to change OBs and found an amazing hospital that did not look down on our baby for having Down syndrome! They gave us resources which led us to finding that we were not alone in this new journey! We started advocating for Vera before she was even born. Then when I was 20 weeks pregnant, we found out that Vera had duodenal atresia. This prevented her from being able to digest anything so shortly after birth she would need surgery to fix it.
When I was 29 weeks we found out the heartbreaking news that Vera had fetal plural effusion also known as fetal hydrops which is an excessive amount of fluid. This fluid was pushing her heart to the other side of her body! Her heart was failing and we were told she would die if I didn’t go through a surgery procedure to place a shunt on her side to drain fluid from her body. Our hearts broke, this was so unexpected! This procedure was very risky and there was a chance of miscarriage. But it was a necessary risk because we were about to lose her!
We had the night to pray and mentally prepare for the very next day and we had everyone praying for baby Vera. Everyone already knew she had Down syndrome and needed surgery after she was born but not that she was in heart failure from fluid overload and she was at risk of being stillborn.
We had no idea how her little body could handle a procedure like this. I was sedated but felt everything. They had to drain 2 liters of amniotic fluid to even reach her! When they put the shunt in Vera’s side, I felt sharp stabbing pain, it was incredibly painful but I knew I had to stay as still as possible to protect her.
After it was over I was placed on bed rest for a week. It was very hard to walk around for the first week.
If I picked up our 2 year old or lift anything my water could break and I was only 29 weeks at the time. My in laws were so amazing! They watched our daughter Lila for the week while I was healing. It was so hard being away from our daughter and it felt like a piece of our hearts was missing. Thankfully my mother in law brought Lila by to visit us but it was so hard not being able to hold her!
A week later we went back for a follow up ultrasound to see how the shunt was working. One of our worst fears had come true as we were told I had to go through it all again because now the fluid had shifted to the side that did not have a shunt and Vera was still in fluid overload.
So this time they sedated me more; and I didn’t feel a thing. When the procedure was over, they told us that Vera had rolled over in the OR while they were placing the shunt, so they were only able to drain fluid from us both using the amniocentesis needle. We took this as a sign from God saying “I’ve got this, she doesn’t need that shunt” and I felt at ease. Another week slowly dragged by, was our baby okay? How many times could her body handle this procedure? We really missed our daughter as she continued to stay with my in laws another week. For this next follow up ultrasound I had my mother in law and Lila come with me! We were all so hopeful that this time we would get good news! But this time we were told that Vera‘s growth rate had gone from 10% to 5% and that she was on the verge of reverse blood flow which meant she would no longer be safe in my body. My heart sank.. I was in my 3rd trimester but I was only 31 weeks and 5 days along. I was admitted that night until I delivered. I felt so much relief hooked up to monitors tracking her heart rate and hearing her heart beating strong! I was able to get some sleep but was woken up abruptly to nurses putting an oxygen mask on me and pushing fluids through my IV in the middle of the night.
They told me that Vera’s heart rate had dropped and I needed some oxygen and to change positions, which helped bring her heart rate back up! The next day the doctors told us that 35 weeks was ideal from a surgery standpoint as she still needed gastrointestinal surgery right after birth and not to mention her lungs were very premature. That night I was woken up two more times by nurses telling me to change positions. Before going back to bed I prayed that Vera would remain safe no matter what and that if she was meant to come soon, He would protect her. I am really sick to my stomach and my heart is beating out of my chest as I continue to type.. I was woken up a third time but this time there were 10 people in the room. Everyone was being so loud and yelling. They told me they needed me to get up on all fours, as they could not find her heart rate while I was on my back. I was panicking. They were pushing cold IV fluids, putting an oxygen mask on me and then they put a surgical cap on my head. They told me that she needed to be out NOW as they could not detect her heart beat anymore and told me that I needed an emergency c section. I was only 32 weeks and I started shaking uncontrollably, crying and praying. I begged God not take her from us. I begged Him to take me instead.
They wheeled me into the OR and told me they needed to put me under, it felt like forever waiting for the anesthesia to kick in and I started having a panic attack. I felt like my heart was being ripped out of my chest, laying there on that table with the fluorescent bright lights, not knowing if Vera was alive or not. My husband was so scared too, he did not know if he was about to lose us both since he was woken up when they wheeled me out of the room early in the morning.
When I woke up; I immediately asked how Vera was doing. They told me that she was out within two minutes and that she was kicking everyone in the OR! Praise God! Vera Rose Conner was born on August 4th at 5:31am. She weighed 3lbs and was 15.5” long.
I cried happy tears and thanked God for answering our prayers! It was hours before I could see her because I was in excruciating pain. I was grateful that my husband was by her side from the moment she entered this world and that she wasn’t alone.
Those first moments of seeing her were really tough. Here she was this tiny 3lb baby who had a lot of fight in her! She was laying on a tiny bed surrounded by doctors and nurses. She was hooked up to so many machines. I was able to talk to her and give her my finger which she squeezed when she heard my voice and I cried happy tears again! God is so good!
We were told that there was a moderate to large sized hole in her heart, this news was so unexpected.
Back when I was pregnant, we had been told that she had no holes in her heart and her heart was a 10 out of 10 which had given us relief during my stressful pregnancy. We were also told that the duodenal atresia repair needed to be done at three days old. Joy turned into fear once again..could her tiny body handle these two big surgeries?
After seeing her for a brief time, Vera went to the NICU and I had to go back to my room to recover.
My husband went with Vera and took pictures of her sweet face for me! He stayed with her in her private NICU room and came to visit me a few times that night. The very next day I was able to finally see her for more than a few minutes. I was wheeled down and every bump hurt and I just wanted to cry. Recovery from an emergency c section was extremely painful!
I had a major panic attack when I got to Vera’s room. She was just laying there with a breathing tube, hooked up to so many machines. Her tiny body had several tubes and IVs. I was finally able to hold her days after she was born before her surgery; it took four nurses to get her on my chest! It was a surreal moment. Here was Vera our sweet tiny fighter laying on my chest.
We celebrated each tiny victory and tried to not get our hopes up too high. The rooms around us kept changing, new families every few days. It felt like we would never leave. We dreamt of being home together; as a family of four. Those long NICU days were stressful and it felt like they would never end! But they did, after 53 long days of many ups and downs. Veras life is a true testimony of God’s goodness and His love!
My name is Brandi! I am a 28 year old follower of Christ, wife to an amazing husband and mommy to two beautiful daughters! Lila May is our sassy three years old. And Vera Rose turns one in less than two weeks! We found out Vera had Down syndrome early in my pregnancy. We want to show the world that Down syndrome isn’t scary and life is not over! Vera brings SO much added joy to our family! Follow the rest of the story on Instagram @verasvictory_t21
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