For some, natural pregnancy is the hardest game of chance, the most terrifying roll of the dice life has to offer. It is walking into every pregnancy with the reality that you may have to put an end to it all.
For those individuals termination is not a one time risk… it is something faced with every attempt at building a family. It is something that one may go through multiple times before they able to bring home a child. For many it is the only option in making their dream into reality.
We are the genetic carriers of disease causing mutations. Some of us have the condition ourselves, others have found a partner with same genetic errors. Most of the conditions we risk passing on are serious to fatal.
Many of us have previously had affected children passed, some born still, and others who have heartbreakingly been lost after birth. They have faced the loss no parent should ever have to.
Some have witnessed this suffering within their our families throughout over a lifetime. They have lost their brothers, sisters, aunts, uncles, mothers and fathers to the same thing they carry within themselves.
Others have affected, living children and are navigating the world as special needs parent. As much as they are loved and wanted it is no easy task taking care of a medically complex, high needs child. There is no denying that this is a hard life for a child and their family.
We know the disease we carry is not the burden we want to place onto any(more) of our children. It becomes a choice we make protect them from suffering, preserve our marriages, to provide normalcy to our other children and conserve our own mental health. We take on the pain and suffering (sometimes many times) in order to prevent our children from ever knowing it.
Carriers typically face a calculated risk of between 25 to 50 percent odds with each pregnancy, dependent on the means of inheritance. There are always exceptions as seen with mosaicism and chromosomal translocations. Often times we experience the odds playing out far worse in our real life experiences than what is written on paper.
In the end it all depends on how our cells come together at conception; whether our eggs and sperm carry the mutation or not. There is absolutely no control in any of it. There is no genetic memory. But every attempt has one pleading for the right combination of genes that will provide the happiest and luckiest of endings.
Facing a TFMR (termination for medical reasons) becomes the only option in having healthy, biological children when IVF is not possible, due to financial burden, conditions that are only found on ultrasound, and incompatibility with the process itself.
It is painful knowing that we may lose children in order to have the opportunity to bring one home. Each of our attempts carry so much gravity and hope that things may possibly turn out right. But with each attempt comes with the real possibility and risk of falling on the pathogenic odds… having to say goodbye far earlier than you could ever hope for. Every baby is wanted from the start, but not all of babies get to come home.
As a dominant or X-linked carrier you face the higher odds… it’s a coin flip each time. Depending on severity, individuals may know what they have faced long before attempting to start a family. But this does not make the circumstances any easier.
It may be something that has caused grief in a family for generations. And it is something that may be a continual source of struggle for future descendants ability to build their own family. This is something that the carrier parent may take on much guilt and pain on their path to becoming a parent. It is a worry that some carry with them for years before finding a partner and attempting to conceive.
Other dominant carriers are those who newly carry their condition, and are the first in their family with the mutation. These individuals are affected with the condition themselves and know the suffering first hand.
As a recessive carrier both partners are affected with mutations to the same gene. It’s a coin flip from each parent, requiring bad genes from both to cause the disease. It is estimated that all people are carriers of up to 6 recessive disease causing genes, but because a recessive gene requires a mutated copy from each parent to cause issues, most people will never know.
In essence you have to be genetically incompatible with the one you love most and chose to have children with. Although carrier screenings do exist, most recessive carriers receive the surprise of their struggle to create a family by getting pregnant with their first affected child. It is something that hits so far out of left field and shakes the very foundation of what life was before.
Carriers live with a curse that is next to impossible to completely grasp, unless you’ve been through it yourself. Pregnancy means repeated imagining scans and more experiences with needles than any person should go through. It’s experiencing the worst parts of pregnancy with the possibility of never experiencing the most memorable.
It’s a practice of patience waiting for genetic results or some type of indicator to appear. It’s watching friends and even family members with silent jealousy fall pregnant and bring home babies when your body has attempted multiple times to the same.
It’s continuously starting over hoping that something can be different in your next attempt. It’s the gut wrenching feeling finding out you are pregnant with yet another sick baby.
It is the defective, broken emptiness that comes with not being to do something that comes so naturally and instinctual to our species. It’s the inner void that you feel waiting for your turn to be happy and wondering if it’ll ever happen.
It’s the loneliness of your story and losses being too taboo to share and receive widespread support. It’s the lies and stories you tell to conceal or explain away these problems to those who have never lived it.
It’s saying goodbye to a child you feel you failed despite all of the love you have for them. It is living without one or more your of your kids for the rest of your life. It is the chronic predicament that never goes away, that time never heals.
This problem you must face over and over again until you fall on the good odds that eventually show face. It’s the hope that overcomes the fear and keeps you invested in not allowing a shortcoming on the molecular level to steal the future you want most.
Most people will never understand why we try, why we have ended multiple pregnancies for this all. Comments exist disputing whether we are worthy of even reproducing or if we should be forced to be sterilized.
As you can imagine the pro-life community has their thoughts about our choices to protect our beloved children from harm. There’s no escaping it… even our closest friends and family cast their quiet judgments.
Why wouldn’t we just give up and throw in the towel instead of facing this impossible nightmare time and time again? Maybe we want to be parents more because life seems to tell us no. But I’d like to believe it’s because we have seen the value in it and know a healthy child is a gift to be cherished.
How could we stop on such a bad note? How could we end our journey to parenthood with a loss and never allow ourselves to see the other side?
There would be little peace in that. It would be a lifetime of heartache. We are not less deserving of having families and having biological children than anyone else, whether we have a disorder ourselves or found a partner with the same disease causing variants.
I don’t think those who have known nothing, but easy reproduction and healthy children have any relevant opinion. This is a situation that has potential to affect any and all people. We want the same thing that most of the world desires, but for us it is much harder and requires us to walk a very intentional, often painful path to become a parent.
As much as we wish it wasn’t our burden to bear, the option to terminate is something that empowers the genetic carrier. It is family planning. It allows us to make one of the most important decisions of our lives and future. It allows us to make the most compassionate choice to eliminate a devastating gene from our family, prevent suffering or post natal death to our child, and decide how many medical complex, high needs children we can care for.
For many of us this decision is one we thought we would never have to make, but we discovered we are the unlucky few who this decision would become crucial for. So we keep pushing on until we see the other side of our odds, and reach our happy ending. It’s no easy path, but it is ours.
This story is an anonymous submission from the wonderfully brave Mama of Blake, Aurora, and Orion/Avani (waiting on gender/microarray) results.
