I am writing today about Spina Bifida awareness again.
My youngest has SB so it’s a subject near and dear to my heart.
Today I want to talk about the fact that abortion rates for pregnancies with a diagnosis of Spina Bifida is 64%. I do understand exactly why this is. Doctors will tell you it is because people want “designer” families. Where if there is ANY known defect the parents will choose abortion more often than not. I am here to tell you that it’s really not that at all. At least not in most cases. So… if it’s not that, then what?
I have talked to several other parents who got the prenatal diagnosis, and 100% of the time they will look at you in the ultrasound room and say “do you have anybody here with you?” In the most sad voice you will ever hear. The panic will start to rise.
Sometimes they will tell you statistics. Other times they won’t. They looked at us and said “we are very sorry, he would have been a boy.” There is no faster way to send a pregnant lady flying out of your office sobbing uncontrollably than to make her think she has had a 2nd trimester miscarriage.
Then you will see your doctor… we went immediately to the clinic and they took one look at me and called the dr. He was busy, but we were escorted to a room where he came in almost immediately. He said to us “there are some concerns with the ultrasound” and I asked “wait… concerns? That’s all?” And he said “Yes. It appears part of the spine did not form correctly.” Silence. Then a sob. From me. A sob of relief. The doctor misunderstood and looked very concerned, until I said “but there is a heartbeat?!” He looked shocked and said “yes, absolutely.” And got the Doppler out so that we could hear it.
2 weeks later, we went in for our first level 2 ultrasound. The first of 16. We went in to the specialist office and they again told us how sorry they were. I think that’s all they can say? I don’t really know, but it was the common reply when people found out we were there for a medical level 2 ultrasound. If you have never had a level 2 ultrasound I can tell you they take a long time. With my first one they measured my little guy, measured the spinal cord defect, measured all of his organs, measured his ventricles, and let me hear his heartbeat from each chamber. Some of the ultrasound was done in 3D as well.
We were at the specialist clinic. The clinic that takes care of moms and babies when there are known problems. They sat us in the consultation room, brought in a HUGE folder, and sat across from us at a table.
“Hello Mom and Dad” hi
“We trust you had a good drive in?” Yes, thank you.
“Ok well let’s get right into it and talk about your pregnancy” ok
“As you know, there are issues with the fetus, yes?” (Note they have not referred to him as “your child” or “your baby”) “yes, that’s why we are here”
“Ok well, given the levels of spinal cord injury, we can tell you he will likely never walk, sit, eat…” they told us he would be in a vegetative state for his entire life. They told us that his ventricles were pressing on vital parts of his brain and they would not develop properly.
Then… Then this.
“We want you to consider quality of life control.” What?
“We want you to think of his quality of life.” “Ok.”
“And we want you to understand that he won’t have any quality of life if you continue this pregna…” “NO.”
“No what?” “I am NOT aborting my baby!”
“Well if you can’t think of his quality of life, think of yours. Think about having such a severely handicapped child. Think about how that will impact your life. Your husbands life. Your other child’s life.” “NO and you don’t get to speak to me about my other child.”
This went on for over an hour.
We left that meeting feeling overwhelmed and like nobody in the medical world was on our side. We went back every week for the check ups and every week we sat through that talk. Every week until I was 28 weeks pregnant. We reported them to our family doctor who wrote letter after letter in our support and telling them to lay off… our family dr was on our side 100% he said it was refreshing to see someone who didn’t want a designer baby… I replied with “I think you would find that less people want designer babies than you’re led to believe… I think if specialists didn’t try to scare parents off the bat, things would be very different.”
How much of that is because specialists scare parents and make them believe they can’t handle the amazing child they have been trusted with? How much of that is on advice of the same Drs who have sworn an oath “to do no harm“?
Because let me tell you… they are doing plenty.
This is why we need education and awareness. This is why I will write post after post trying to show anyone who will listen that it’s such an amazing journey… any parent who might stumble across this blog when the words “Spina Bifida” first leave the Drs lips and you’re trying desperately to find a ray of hope… a good news article… anything in support of you… I support you. There are a lot of us who support you. Don’t be afraid to reach out!
I write because 64% is a number that I can’t wrap my mind around. It’s a number that makes me SO sad. It’s a number that I hope to help change.
I can’t physically speak to the parents getting these diagnoses… so I will write. As much as I possibly can.
And I hope you will share these and they will reach someone who really needs to hear all of this.
Take care of yourselves. ~C