18 Jun 2014 Why we need a law: Sarah’s story
The following is a guest blog by Sarah Hekert.
When my husband and I got married, we were told that we probably would never naturally conceive a child. It was possible, but the chances were slim. My husband was diagnosed with a rare condition called MEN 2B, which caused cancer to grow in his body. This impacted many things, including his ability to have children.
Contrary to what the doctors told us, God blessed us with not only one, but two children.
And here is where it gets tricky.
Colin’s condition is hereditary. Any children we have will have a 50% chance of inheriting this horrible condition.
When I was pregnant with our first, I was told that a test could be administered to see if the gene had been inherited. The medical staff were confused when I declined, stating that no matter what, I was having this baby. When she was born, the tests came back positive. Our first child had MEN 2B.
From the medical community, and from many people who found this out, I heard mumbling and shock that I would knowingly have a baby like this.
When I found out I was pregnant again, the same tests were offered, and refused. Then my husband became sick. Really sick.
The tests were offered again. Again, I refused them. When it became clear that my husband was not going to make it, I was told that it was not too late – that there were places that could still help me make my decision on the baby. At this point, I was 28 weeks pregnant.
We need a law. If we had a law, I wouldn’t have gone through the most difficult part of my life (my husband’s funeral) with people hinting, and sometimes outright saying, that there was another choice than having my baby.
We need a law. If there was a law, I wouldn’t hear muttered words about the ways I could have avoided this every time I end up in the hospital with my oldest.
We need a law. If there was a law, people wouldn’t try to make me feel horrible for bringing my two wonderful blessings into the world.
Every parent of a child with Down’s syndrome, with Spina Bifida, with MEN 2B, with any genetic illness will tell you that their child is special, that their child is a blessing, or that their child is normal but for the illness.
But doctors, nurses, and the general public don’t see this. They see children that should not be here when there was another option before birth. They see little nuisances that take up resources that could mean an easier shift.
We need a law.
Every child is important, even those who have diseases.
Every parent deserves to have care given to their child, without feeling the judgement that they allowed this child to be born.
We need a law.