I actually posted this to my moms group
yesterday, about 10 hours after we found out about our baby girl having Trisomy
18. I’m not sure why I did it, but, I guess I felt an overwhelming need to
share what we were going through with someone. Also, these ladies have been a
part of my life since Alberto and I moved to Portland. They are my PDX family
and I don’t know what I would do without them.
“I have been hesitant to share anything…with
anyone. Alberto and I have kept this to ourselves, mostly, with the exception
of our families and employers. A lot of the reason why is because things have
been so up in the air and unknown and that makes it difficult to explain. But,
today we got an answer to the question we’ve wondered for almost 3 weeks now
and we are absolutely devastated. At this point, I think I need the support of
you ladies to help get me through the terrible, unthinkable, shattering reality
that I am facing.
On January 5th I found out I was pregnant. We had our first appt on February 12th and at that appt, everything looked great during the ultrasound. The baby had a strong heartbeat, and I got my blood drawn for the first trimester screening, as per usual. One week later, I got a call from a genetics counselor from Kaiser, explaining that there were some things they saw on my blood work that concerned them. In a nutshell, the odds of our baby having trisomy 18 (Edwards syndrome) or trisomy 13 (Patau syndrome) increased to a greater than 1 in 5 chance. She presented us with some options (another blood test for screening, a diagnostic test called chorionic villus sampling, or an amniocentesis) and told us that we could do whatever we wanted to do…just to take some time and let her know how we wanted to proceed. That night, Alberto and I discussed those options and we decided to do the non-invasive blood test first and if we needed to do a CVS or amnio following that blood test, we would cross that bridge when we came to it.
One week later, we went in for what we thought was an ultrasound and blood test…but, things quickly took a turn for the worse. During the ultrasound, the technician found what is called a cystic hygroma. Basically, it is an enlarged pocket of fluid surrounding the baby’s head and neck. The next thing I knew, the ultrasound technician was walking us to the genetic counselors office to talk about what was seen over the ultrasound. She went over chromosomal abnormalities associated with their findings during the ultrasound (trisomy 18, trisomy 13, Downs, Turners syndrome) and presented us with more options. We asked her to leave the room so that we could discuss things…and we decided to do the CVS that day. A CVS is a procedure that is similar to a pap smear (although 10x more uncomfortable and painful) takes tissue from the placenta and they grow cells from that tissue and analyze those cells for chromosomal abnormalities. We were told we would get definitive results from this test in 7-14 days.
Today was the day we received the results…and, we learned that our baby, a girl, has trisomy 18. That means she has an extra copy of chromosome 18. I won’t go into detail about what that means…but, very generally, it means that the best case scenario for our baby is that she would be born only to die within a week of her birth.
We are profoundly heartbroken…and, we have a difficult road ahead of us. I tell you all this, because, although I don’t know if there is anything that anybody can do to take away the deep pain, anger, and hurt I am feeling. But, maybe one of you have been through something like this or you know someone who has been through something like this and you can help me with words of encouragement, or of love. Or, something. I don’t know…I just need any and every positive thought or prayer you have, because, I feel like dying. I know I cant, because, I have Isla to think of and to love and to protect and to live for. But, God help me as I try to navigate this journey of being a present and good mother to the child who is here with me while I mourn the life that will never be of my dear Angel Baby D.”
On January 5th I found out I was pregnant. We had our first appt on February 12th and at that appt, everything looked great during the ultrasound. The baby had a strong heartbeat, and I got my blood drawn for the first trimester screening, as per usual. One week later, I got a call from a genetics counselor from Kaiser, explaining that there were some things they saw on my blood work that concerned them. In a nutshell, the odds of our baby having trisomy 18 (Edwards syndrome) or trisomy 13 (Patau syndrome) increased to a greater than 1 in 5 chance. She presented us with some options (another blood test for screening, a diagnostic test called chorionic villus sampling, or an amniocentesis) and told us that we could do whatever we wanted to do…just to take some time and let her know how we wanted to proceed. That night, Alberto and I discussed those options and we decided to do the non-invasive blood test first and if we needed to do a CVS or amnio following that blood test, we would cross that bridge when we came to it.
One week later, we went in for what we thought was an ultrasound and blood test…but, things quickly took a turn for the worse. During the ultrasound, the technician found what is called a cystic hygroma. Basically, it is an enlarged pocket of fluid surrounding the baby’s head and neck. The next thing I knew, the ultrasound technician was walking us to the genetic counselors office to talk about what was seen over the ultrasound. She went over chromosomal abnormalities associated with their findings during the ultrasound (trisomy 18, trisomy 13, Downs, Turners syndrome) and presented us with more options. We asked her to leave the room so that we could discuss things…and we decided to do the CVS that day. A CVS is a procedure that is similar to a pap smear (although 10x more uncomfortable and painful) takes tissue from the placenta and they grow cells from that tissue and analyze those cells for chromosomal abnormalities. We were told we would get definitive results from this test in 7-14 days.
Today was the day we received the results…and, we learned that our baby, a girl, has trisomy 18. That means she has an extra copy of chromosome 18. I won’t go into detail about what that means…but, very generally, it means that the best case scenario for our baby is that she would be born only to die within a week of her birth.
We are profoundly heartbroken…and, we have a difficult road ahead of us. I tell you all this, because, although I don’t know if there is anything that anybody can do to take away the deep pain, anger, and hurt I am feeling. But, maybe one of you have been through something like this or you know someone who has been through something like this and you can help me with words of encouragement, or of love. Or, something. I don’t know…I just need any and every positive thought or prayer you have, because, I feel like dying. I know I cant, because, I have Isla to think of and to love and to protect and to live for. But, God help me as I try to navigate this journey of being a present and good mother to the child who is here with me while I mourn the life that will never be of my dear Angel Baby D.”
Within minutes I started to receive support,
love, prayers, and kind words from the ladies of this group. I felt immediately
that I made the right decision in sharing with these ladies. Some of them even
provided me links to blogs of women they knew who’ve gone through something
similar. I hadn’t thought about seeking out support in that way (reading the
stories of other angel baby moms), but, I was so glad that these moms had
thought about it. Knowing that these women were thinking about me and my
family, praying for us, and sending us their love was so helpful to me in those
first few hours. I felt blanketed by them, and, in some ways…I felt like I
wasn’t alone in what I was going through.
So, thank you to all the ladies of my moms group. Thank you for reaching out and thank you for listening. I love you ALL
so very much.
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