No one should ever have to experience the loss of a child. But that’s what legislation passed by the Oklahoma, Indiana and North Dakota legislatures would ban abortions for reason of genetic abnormality would do; it would force women to carry a fetus diagnosed in utero with a terminal genetic disorders to full term and then slowly watch their child die.  I know this, because this is the reality I’m currently living.

My husband and I were in our early 30s when we decided to start a family.  We waited until we were financially stable and established in our careers.  My pregnancy was planned, wanted and unremarkable. Then, when my son was 10 months old he was diagnosed with an incurable and terminal genetic disorder. One day, my husband and I were dreaming up all the great things he might one day do; the next, we were devastated to learn how very numbered his days were.

He seemed like every other baby boy we knew: inquisitive, budding with personality, hitting achievements in his own time. Apart from being a bit low in his weight percentile and taking a little longer than average to achieve some of his early milestones, you would have no idea that he was any different. We had no idea he was any different until an off-hand observation at a wellness doctor visit eventually led us to a life-shattering diagnosis.

When our pediatrician arranged for a series of tests at our area children’s hospital, we were thankful to have a cautious doctor watching out for our son. At the hospital when specialist after specialist came in to evaluate our son, we were appreciative of the attentive care he was getting. We felt confident we would get to the bottom of the unexpectedly abnormal blood test results that started the hospital stay. It wasn’t a big deal. We didn’t know at the time that our son’s disorder was so rare, it would take a team to diagnose him.

When we were told he would likely not see his third birthday our hearts were shattered. I’ll never forget that first night, my husband and I cornered in the dark hospital room quietly sobbing in huddled shivers of disbelief and despair. The beautiful little boy we loved so dearly would be taken from us. We clung to each other then, and we have clung to each other ever since.

We later found out that both my husband and I are carriers of a rare genetic disease. We were floored by this news; no one in our families had ever seen this condition before. Probability told us not to worry; the chances of something like this happening are infinitesimal. My son’s condition is more closely linked with less genetically diverse populations, however, my husband and I grew up in different parts of the country, we have different ethnic backgrounds and yet here we are.

Living with a child with a terminal genetic illness is hard. The days are exhausting and emotionally taxing, even if simultaneously beautiful. While I wouldn’t give up a single day with my son, if I knew there was a way to spare him the pain of his illness I would.

“No one should ever have to go through this,” I hear day after day. And it’s true.

I would not wish this pain on anyone, but that is what legislation recently passed by the Oklahoma, Indiana and North Dakota state legislatures would do. This legislation would ban abortions for reason of genetic abnormality.  On the surface this legislation is intended to prevent parents from aborting pregnancies where the fetus has survivable genetic abnormalities like Down syndrome or genetic conditions like cystic fibrosis, where proper medical treatment can allow for a high quality of life.

Whatever your thoughts on that separate and equally difficult issue, this legislation ignores that not all genetic abnormalities are survivable, not all are treatable or even manageable.  Many genetic conditions detectable in utero such as Trisomy 13 or anencephaly are nearly always fatal and this legislation removes choices from a woman and her doctor. It treats the issue of abortion due to genetic abnormality as black and white, when there is so much gray.

My husband and I inhabit a strange space right now. Loving every moment we have with our sweet little boy in no way belittles the struggle of falling in love with your child with the taunt of death ever-present. The more I love him the more I know it will hurt when the inevitable happens. The older he gets the closer he gets to the end. We are living in a sort of purgatory space between life and death.

If we hadn’t received the earth shattering news about our son, my husband and I would probably be trying to have another child. If we were to get pregnant again there is a 25 percent chance the child would have the same condition as my son. We also live in one of the states affected by the new anti-abortion legislation.

We have talked through our options with our geneticist for future children. While we would much prefer to go through IVF and screen the embryos for the genetic condition before implantation, this comes with a five-figure price tag not covered by insurance. Otherwise, we can conceive naturally, conduct genetic testing as early as ten weeks, and decide whether to terminate the pregnancy if the embryo has the condition. Under the new legislation, I would need to cross state lines to procure an abortion if genetic testing confirms the embryo has the condition.

I’m fortunate I have those options, and I’m aware of that. I have secure employment, a flexible schedule that lets me fit in all the doctors’ appointments, good healthcare coverage, and a healthy and supportive marriage. For women that lack those resources they can find themselves trapped, with no options. I can’t imagine lacking the resources to meet my family’s physical needs while under this emotional pressure.

No matter your circumstances, raising your child only to lower them to their grave is not easy and it requires grace from your family, your community and your civic leaders. Loving my son doesn’t nullify the stress of caring for a helpless child while nurturing a marriage grappling with so much pain. I don’t know that I would want to bring another life into this world only to watch it slowly burn out.

I need state governments not to subject others to this immensely difficult life without giving them a choice. I hope we live in a society with the heart to understand and the morality to refrain from judgment.

Seventy-five percent of couples who lose a child end their marriage in divorce. It’s a talking point I’ve heard consistently over the last year while managing my son’s illness. My husband and I are fighting against the odds. I would never want to force families to see every heart-wrenching step of their child’s death.

If faced with the very real possibility that my future child suffers from the same terminal disorder and I have the choice of having an abortion or watching my child die before my eyes, I honestly don’t know what I would choose. But I know I deserve to have the choice.

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Categories: Disability + Disability Advocacy, Pregnancy, Birth + Family Planning