On March 20, 2015 a pink line spread across a pregnancy stick.
Normally this result would thrill me! I would immediately look into the mirror and say to myself, “You’re a new mommy!” and I would be smiling from ear to ear. Then I’d quickly do the math in my head to calculate the due date. Then I would wonder if it’s a boy or a girl. Then I would think of a fun way to tell Rich and the kids. All these thoughts would go through my mind with one major feeling running through me: excitement!
I have peed on many a pregnancy stick in my day and have had very few negative results and fourteen positives. Fourteen positives! Five of those fourteen positives didn’t make it, but nine of them did. I have had nine children born to me, plus a stepson. Five boys and five girls.
And now I was staring at my 15th positive result, a possible 11th child for our family. But this one had me worried. This one had me staring at myself in the mirror and instead of saying, “You’re a new mommy!” I said, “Oh, no….”
And it wasn’t that I didn’t want another baby. Of course I did! The thought of a new baby always thrilled me. It’s not the baby that I didn’t want. It was the pregnancy. The worry. The high possibility of another miscarriage. It was the high possibility that the baby would have health issues due to my being 45 years old. I had five miscarriages in a row after I turned 41. And then at age 43 I had Aiden, a healthy baby boy. And I was so thankful for his health. And I wanted it to end with him. I wanted my fertility years to end on a positive. I wanted that. We wanted that. I had planned on that.
God obviously had other plans for me, because the stick said POSITIVE. And I’m not one to argue with the stick. They have never lied to me before. Three days later a blood test confirmed the stick, and then two weeks after that I started with the familiar morning sickness.
Things were rolling, and yet I still wasn’t excited. I expected to lose the pregnancy at any moment. My husband kept asking if we could tell people yet? He was so excited. But I said no, it’s too early. So we waited. And to my surprise the pregnancy continued. When I reached 11 weeks I decided that I might as well get an ultrasound to see if there was a growing baby inside of me. The ultrasound confirmed that there was indeed a little kicker in there, moving all around and practically waving at me, “See, mom? I told you so. I’m on the way!” was what the little kicker was telling me. And it was at that moment while I was lying on that exam table staring at my new baby on the monitor that I finally grasped the idea that this was really going to happen. We were going to add on to our family. Again.
And I was thrilled. Thrilled! I walked out of that office and practically skipped to my car. This meant that Aiden would have a sibling close in age! Someone he could go through school with and ride bikes with and do all sorts of things with! This meant that I could do the whole newborn thing all over again! And the pregnancy? Oh wow, how I loved pregnancy! I could do some really neat pregnancy photos this time around. I could do another home birth, making it my fifth home birth (water birth) in a row. And I could baby-wear again and breastfeed again and set up the crib again (which hardly gets used because we co-sleep, but still. Setting up the crib is always exciting!) Another baby! I couldn’t believe my luck. I was SO happy. So overjoyed. So looking forward to this new little one.
We told the kids shortly after that ultrasound. They were all very surprised because we had told them many times after Aiden’s birth that there would be no more babies. That we were done. Finished. For sure. No more babies. Aiden is the last baby, we told them, so make sure you enjoy him! And at first they doubted us, and then after time they began to believe it and accept it. And then a little more than a year later we tell them we are expecting another baby! Our children may never trust what we say again. But they were all excited after they got over the shock of it all. Our kids love babies.
My husband was eager to tell everyone, but I still wanted to wait. With Aiden’s pregnancy, we waited until I was 16 weeks along before we let friends and family know. I told my husband I wanted to do the same with this one. He reluctantly agreed, and the kids also said they’d keep it hush until then.
At 15 weeks I went in to get my blood drawn for routine blood work and also for the MaterniT21 screening. For those of you not familiar with that test, the MaterniT21 blood test checks the baby’s DNA via the mother’s blood. They can detect Trisomy 21 (Down Syndrome) Trisomy 18 and Trisomy 13, as well as Turner’s Syndrome, and they can also tell the baby’s gender. I had this test with Aiden, and I liked it as an alternative to an amniocentesis. There is no risk to the baby with this simple blood test, and although it is only considered a screening and not diagnostic, it has proven to be extremely accurate. So I had my blood drawn for these things, and I was told the results would be available in one week. I didn’t give much thought to the tests, actually. At this point I was at ease with the pregnancy. I had gotten past the first trimester, and my morning sickness was finally tapering off, and things just felt really, really good. I didn’t give much thought to the DNA test. The week passed quickly without me thinking much about it.
And then I got the phone call. It was Friday, June 19th at 2:40pm. There are certain moments in your life that your brain won’t ever let you forget, not even if you try. This phone call is one of mine.
It was my OB on the phone. That was the first red flag. When I heard his voice, I immediately knew this wasn’t going to be a good call, because normally it is a nurse that gives you good test results over the phone.
“Hi, Katrina. How are you doing, hon?” he asked. He called me “hon” – that was the second red flag. And his voice wasn’t right. He was speaking slowing and too gently, as if he was talking to a spooked or cornered animal. Or to a mother who was about to get her world shattered.
I said, “I’m okay.” But I’m really not okay, am I? Not after you tell me what you are going to tell me. I won’t be okay ever again, will I? I shut my eyes and braced myself. No, no, no…don’t say it….
And then he said it. He said what I was afraid he was going to say. And my world just stopped.
Has your world ever just stopped? It’s an interesting feeling, actually. It’s like time just freezes for a few seconds, and a silence surrounds you and you are the only person there in this very strange void. Things and conversations are obviously still going on around you, but your brain makes it all silent. And your blood turns cold. It actually does. It just gets cold in that one instant. It’s very surreal.
He said, “Your test came back positive for Trisomy 13, Katrina. I’m so sorry.”
This is where my world stopped, and then three seconds later it resumed again. Just like that.
And I said, “Okay….well…. that’s not good. That’s incompatible with life.”
He said, “Yes, you are correct. I’m so sorry.”
And I said, “So…what now?” Calm. I was very calm.
He said, “Well, I’d like for you to see a perinatologist who can give you a detailed ultrasound and possibly an amnio to confirm the results. There’s always a chance that the test is wrong, but I have to tell you that these new blood screenings are very, very accurate. The possibility of a false positive is very unlikely.”
And just like that my dreams of this new baby, they were shattered. Out of the three most common trisomies, Trisomy 13 has the worst outcome. I knew this. The most likely outcome is death, often before the baby is born. And I stood there in my kitchen with the phone to my ear and I thought to myself: There will be no new baby after all Aiden will not be a big brother. I went through 16 weeks of pregnancy for nothing.
I was able to write down the phone number of the doctor that I needed to see next, and before I hung up the phone, my OB asked me if I had any questions for him. I had only one question. I asked if he would tell me the sex of the baby. Even though previously I had made up my mind that I did not want to know the baby’s gender, that I wanted to be surprised at the birth, at that moment I desperately needed to know. I needed to know just who was in there, who would I be losing? Who?
He said, “The baby is a boy.” There was no excitement in his voice. Just sadness.
I smiled and repeated it back to him, “A boy.”
I smiled. I actually smiled. Thinking back to this moment I’m so glad I smiled, that I was able to feel a genuine sense of joy at the news that he was a boy. I feel that my son deserved that response from me, his mommy. I’m so glad that I smiled!
The doctor told me he would talk to me soon, and we hung up. I stood there in the kitchen completely numb. I could not cry at that point. I sat back down at the kitchen table with a few of the kids and continued with what we were doing before the phone call. But I wasn’t really there. My mind was elsewhere, lost in a fog made up of confusion, despair, grief and maybe just a hint of denial.
A boy! A sweet baby boy. Another son. I already loved him. So much. I had just started to feel his soft little kicks and movements. Oh, how I wanted him. How could this be happening?
I made my appointment with the perinatologist for the following Friday. So I spent the next seven days pouring over the internet for any information that I could find on Trisomy 13, aka Patau Syndrome. I was looking for some hope. What I found was not encouraging.
Trisomy 13, also called Patau syndrome, is a chromosomal condition associated with severe intellectual disability and physical abnormalities in many parts of the body. Individuals with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes (microphthalmia), extra fingers or toes, an opening in the lip (a cleft lip) with or without an opening in the roof of the mouth (a cleft palate), and weak muscle tone (hypotonia). Due to the presence of several life-threatening medical problems, most infants with trisomy 13 die either in utero or within their first days or weeks of life.
No matter where I looked, the facts of the condition did not vary much. So I stopped looking for facts on the condition and instead focused on finding out the possibility of a false positive with the MaterniT21 test. I found a little bit of hope there. There were a few reported cases of false positives in predicting Trisomy 13 with this particular blood screening. There was a small possibility that the T13 cells were confined to the placenta and that the baby was unaffected. So I clung to that hope, and I spent the rest of the week praying that our baby would be okay.
On June 26 we had our appointment with the perinatologist. The ultrasound showed that our baby did have some of the major markers for Trisomy 13. Our hopes that the blood test was wrong were dashed. I saw my husband wiping at his eyes during the ultrasound, but I refused to cry. I wanted to see him, my baby boy, without blurry vision. Maybe this ultrasound would be my last chance to see him alive? I didn’t know. So I had made up my mind that I would cry afterwards, but not during the exam.
During the exam I asked questions and I asked the doctor to point things out to us, and I even smiled a few times as I saw the baby moving about. He seemed a bit annoyed that the ultrasound wand was pressing into his space. The doctor pointed out his cleft lip and palate, and she showed us where he has a neural tube defect (called an encephalocele) at the back of his head. He appears to also be missing the vermis in the cerebellum, and his heart has a mitral valve that is not working correctly and is allowing back flow of blood from the bottom chamber of the heart into the upper chamber. His head shape didn’t appear to be the typical egg-shape that it should be but instead seems to narrow a bit at the forehead. Other than those things, he appeared to be fully formed with all his little boy parts, a stomach, a bladder, two kidneys and all his fingers and toes. His legs and arms were moving about, and his little hand was rubbing his sweet little face. Just looking at him via the ultrasound, how alive he was and how normal he looked despite the T13 markers, I was heartbroken yet full of joy a the same time. A mixture of two emotions that I wasn’t expecting. Quirky chromosomes or not, that’s my baby boy, and I was overwhelmed with the feeling of love for him.
After the exam ended, the doctor handed me four ultrasound photos, and then she said she would see me back for another ultrasound in 4 more weeks. We decided against getting an amniocentesis because the Trisomy 13 had been pretty much confirmed by all the markers. Never did the doctor mention my “option” to terminate, and she did not tell us anything negative about our baby or speak about him in a way that was anything but respectful. She didn’t say he “would suffer” or that termination “would be the best thing” for him and for us. My husband and I were expecting to hear those things from the genetic counselor, who we met with before the exam, and from this doctor as well. But they never mentioned it. We knew that it is very, very common for people to abort babies with Trisomy disorders, and especially Trisomy 13 which has the worst outcomes of the three most common Trisomies, so we were surprised when termination wasn’t mentioned to us. Wasn’t it part of their job to mention our “options” with a pregnancy that had a poor outcome? When the baby was said to be “incompatible with life”, isn’t termination usually encouraged? I was only 16 weeks along. Abortion in my state is perfectly legal at that gestational age, and actually the expected choice with a baby that had our baby’s condition. So where was our counsel on that? Don’t get me wrong, both my husband and I walked out of there so relieved that no one suggested we end our baby’s life. We were prepared to explain our beliefs on that. But thankfully we never had to. And that was such a blessing to us. We were already heartbroken. We didn’t need the added grief of having to defend the value of our child’s life.
We went home and shared the news with our children. That wasn’t fun. There were tears, and there were questions. Some of the kids remained silent while others wanted to know more details. It was a hard talk to have. We told them honestly that we did not know how long the baby would be with us, that there was a possibility that he could pass away during the pregnancy, or he may be born and live a few minutes or an hour or a day or two. Maybe a bit longer. We didn’t know. Only God knew. We told them that his body had an extra chromosome which wouldn’t allow some of his major organs to work correctly, that he wasn’t really “sick” but that his body was just designed differently than ours and wasn’t made to live long on this earth. We told them that despite his condition, right now he is here with us and we are going to enjoy him while he is alive and well in my belly, because no matter how short his life may be he deserves to be enjoyed and celebrated while he is here, that his life has a purpose, and that we are his family and we love him no matter what.
Towards the end of our talk, Rich said, “No matter what may happen in the weeks or months to come, right now you guys have a little brother growing in mommy’s belly, so let’s give this little guy a name. Does anyone have any boy names in mind?”
And after a few names were suggested, it was decided that his name would be Aaron.
If he survives the pregnancy and makes it to term, Aaron’s expected due date is December 1, 2015. He is our tie-breaker baby. We now have five girls and six boys.
And the boys want everyone to know this: “BOYS RULE!!”
It couldn’t be helped. They had to claim it. The girls would have done the same thing, lol.