Additional Needs
Being heard
by Sharon F
on 29th May, 2023
The Guilt of a Second Child
Oliver, my sweet first born, came into this world early and with a diagnosis of spina bifida.
It's not that we saw ourselves as risk takers to the mere three percent increased risk, but rather we chose not to fear his or another diagnosis for our future children.
Twenty-two weeks now, and as you can imagine we have already gone through the motions of high risk testing, blood work, and ultrasounds.
Up until now, I guess I spent so much time preparing myself for another phone call and hearing the voice on the other end read off another diagnosis, that I failed to prepare myself for that same voice telling me that all tests came back showing no sign of spina bifida.
First, it was our blood work that came back.
The good ol' second trimester screening that first clued us into Oliver's neural tube defect. It had shown that my AFP (alpha feta protein) levels were merely above the normal range.
Tapping into other women's opinions on a quad-testing board, I was somewhat comforted by the responses claiming their levels were much higher and they ended up giving birth to healthy babies.
Obviously, although healthy in my eyes, that was not the case for me and Oliver was born with spina bifida myelomeningocele.
Back to Theodore (which is what Aaron and I have decided to name him), my blood work came back with everything in normal range.
It was a good sign but these tests are just screenings, not finals says. I was in the middle of my 17th week, when I went in for a routine ultrasound. Or so I thought.
I ended up having my anatomy scan, without any time to prepare myself for what I may or may not hear from the doctor.
With Oliver, we had countless ultrasounds. One every week just about!
I actually have a baby book purely designated to his ultrasound images and scans. Once we knew what to look for, it wasn't hard seeing what was clearly there.
An open sac where his spine failed to fuse together and close on its own. Even the misshapen skull and fluid on his brain were obvious to us now.
So here I was, during Theodore's scan, trying to play doctor and look out for all the obvious signs of this defect.
When it was confirmed that indeed nothing presented itself as, “out of the ordinary”, and seemed to be going as it should, I felt this pain. Almost like an emptiness.
I had pictured a concerned tech calling in the doctor, the doctor grabbing tissues again as he explained to me the findings. I had imagined feeling prepared for another baby with spina bifida.
Not a baby boy with no diagnosis.
Not having an uneventful birth, or doctor visits few and far between, or even a child who had no doubt that he would walk in his near future. I was not prepared for the guilt I felt, knowing that Oliver might one day feel different than his siblings.
Although it is still something I am learning to cope with, as each day passes, I can only do my best as a mother to instill in my children that they are all made with different qualities that make them awesome!
Hormones are never good in an equation like this, but for those who have already had children after having a child with a diagnosis, I would love to hear how got through it all.
How did you manage to rise above the negative feelings or quilt?
What is it like now?
