Aaron Roldan, Trisomy 13 (translocation), 11/4/2015 – 11/9/2015, Ladera Ranch, CA
My son Aaron is the 11th child in a sibling group of eleven – he was and will always be “the baby” of our family.
On March 20, 2015 I discovered I was pregnant. I was 45 years old and thought I was done having babies, but apparently God had a different plan for me! My youngest child at that time was 21 months old, so I was excited to learn that he would have a sibling so close in age.
I had my first ultrasound when I was 11 weeks along, and I saw a very active baby on the screen. I was so happy after that appointment! I remember the walk back to my car and the thoughts going through my head: “Was this a boy or a girl? I can’t wait to tell the kids! I can’t believe I get to do this all over again! I won’t have to put the crib into storage after all. Not for another couple years, at least….” I was really so excited for this baby.
My pregnancy continued along and I felt all the familiar morning sickness. The pregnancy was very much like all my other pregnancies, and this gave me comfort. I knew as I got older the likelihood of miscarriage increases, as does the risk for birth defects. I had my blood drawn at 15 weeks for the MaterniT21 test. I had this test done with my previous pregnancy and liked the peace of mind it gave me once the negative results came in, plus it was fun to know the baby’s gender.
Exactly a week later I got a phone call from my OBGYN. I knew as soon as I heard his voice that he wasn’t calling to give me good news. His voice was unusually soft and he spoke slowly. I was frozen in my kitchen with the phone pressed to my ear, my eyes shut, my thought screaming “Don’t say it, don’t say it, don’t say it…..”
“I’m sorry, Katrina. I’m afraid I don’t have good news for you. Your blood test showed positive for Trisomy 13.”
Those words. Oh, wow, how those words changed my life. My world came crashing down the instant he said those words. I remember I got instantly so cold, like my blood turned ice cold. And the world around me was suddenly silent, for like 3 seconds I could not hear a sound. Everything around me was on pause. Then I spoke.
“Well, that’s not good.” was what I said.
“No, I’m afraid not.” said my OB.
“That’s, like, incompatible with life….” is what I said next.
See, up to this point I knew nothing about Trisomy 13 except that it was the worst of the three most common trisomies, and that babies with Trisomy 13 are not able to survive. I had never any reason to research this condition, so I knew very little of it except that. Instantly my mind decided that this baby I’m carrying will not come to be, that he or she will most likely die in pregnancy or shortly after being born. I won’t have a new baby after all, is what I thought. I was so heartbroken.
Before hanging up the phone, I asked my OB what the sex of the baby was. He said, “The baby is a boy.” — and I smiled. A boy! I smiled and was so very happy to know just “who” was in there. I instantly fell in love with my new baby.
An appointment was made for the following week for me to get a detailed ultrasound with a perinatologist. There the baby’s anatomy would be scanned to check for markers, since the MaterniT21 test is only a blood screening, not a diagnostic. I spent the next seven days searching the internet for a history of errors or false positives with the MaterniT21 test, but I found very few. The test is highly accurate, and although there are some false positives reported, the odds were against me. Still, I didn’t give up hope and I prayed and prayed. I also spent a lot of time crying.
Looking back, that week of “knowing” but not really knowing for sure was the worse week ever. I just wanted to know one way or the other.
Finally my appointment came. First we met with a genetic counselor. My husband and I were preparing ourselves for the “termination” suggestion that we were certain we would get, and we were very surprised when no such suggestion was made. Next we were led into the ultrasound room and were told to wait for the perinatologist. That wait was the hardest on me. I knew that once this appointment was over, I would either go home extremely happy, or I would go home grieving for my baby. The doctor came into the room and the exam began. The ultrasound screen was up on the wall for me and my husband to see.
The first thing I saw on the screen was the baby’s abdomen, then an arm, then the head. The doctor was trying to start at the head first, so she just had to do a quick check to see what position the baby was in. But I saw a normal abdomen, normal arm and what looked to me like a typical head. I had been to enough of my own ultrasounds to know what looks normal and what doesn’t.
As she scanned the brain, I could see two separate hemispheres. I knew that was a good thing. So far so good, I thought. Maybe the test was wrong…
“Okay, here is the first marker I am seeing…” the perinatologist said.
And my blood turned cold once again. My stomach dropped. It was true, then. She’s seeing a marker. My baby has trisomy 13. My hope for a false positive was gone. Just like that.
I did not cry. I didn’t want my vision to be blurred. I wanted to see every inch of my baby just in case this was the last time I could see him. I knew, after doing some research, that many Trisomy 13 babies pass away in utero. If this was going to be the first and last ultrasound of my baby, I sure didn’t want to spend it crying.
During the rest of the ultrasound, I smiled as I saw his 10 fingers and 10 toes, his perfectly formed spine, and other parts of his anatomy. He looked like a typical baby to me. He was beautiful. She pointed out the T13 markers that he had; a small encephalocele at the top of his head, a missing vermis in his cerebellum, and a bilateral cleft lip and palate. His heart seemed fine, and everything else seemed to have formed correctly. The doctor said that he appears to have most of his issues above the neck.
We left the appointment with a few photos of our son, and we walked out of the office and to our car. Once in the car, my husband and I finally broke down and cried.
Because our hospital was a Catholic hospital, we were never counseled on termination. It was never brought up as an “option” nor was it ever mentioned. And we were so thankful for that! Because we were already feeling such sadness. The last thing we wanted was to have to defend our son’s life.
I always knew I would carry my sweet boy for as long as he needed me to. That was my job, my privilege, as his mother; to protect and to nurture him for as long as he lives. I knew many people would not understand. I knew many would not agree with my choice. I didn’t care.
Telling our kids was very hard. They always love when a new sibling is on the way, and they were SO excited for this baby. To learn that he would most likely not be with us very long just crushed them. We had a family meeting and told them the facts of Trisomy 13, and we let them know that this baby’s body just wasn’t made to live on this earth very long, but we will love him and enjoy him for as long as he is here. We all took turns with name suggestions and it was decided that this new baby boy would be named Aaron. He would be our sixth boy, and the final count was six boys, five girls. Yes, Aaron was our tie breaker. They boys were happy about that.
I continued to get regular ultrasound scans every 4 weeks to check the growth of the baby and to see how he was doing. Each appointment he surprised the doctor by how big he was getting. Trisomy 13 babies typically measure very small in utero, but Aaron was growing at the normal rate.
(to be continued)