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TFMR- T21 with enlarged kidneys and bladder




Feb 2020

I am a Program Manager who is lucky enough to have a good job, own a house, I am married to a wonderful man, and I am a mother to the world's most beautiful little girl. I consider myself very strong in my Christian beliefs. Although I've always supported a woman's right to choose, it's never been something that has impacted me personally as my personal choices have never been threatened or questioned. Last year, my husband and I became pregnant again. We were thrilled. Even happier to discover we were having a little boy! And then, during a follow-up scan for my first-trimester screening, the doctor began to discover some serious problems.


My little boy's kidneys and bladder were severely enlarged (I could see it myself during the scan--I couldn't stop crying). Apparently, they were not emptying. This is a serious condition that often results in the baby not surviving the pregnancy. We held off on making any decisions until further testing came back which showed that our little boy also had the extra chromosome for Down Syndrome. This diagnosis coupled with the physical abnormalities led us to decide what we knew would be best for our son. As much as it hurt me to make this decision, I never doubted that we made it out of pure love for him.


Just thinking about him, suffering, hurting, and in pain before having ever lived was unbearable. Thinking about the life I would never be able to give him. Knowing that it was likely he would not make it to term, I was so, so grateful in that moment that I had the choice to save him, spare him, to stop his little pain, and to heal him.


Then came the hard part, finding out that perhaps in this country, I as his mother, did not really have the choice to do what was in the best interest of my son. Someone else, a stranger, or a political group, would decide instead. My insurance, Aetna Federal, said they were not allowed to cover the procedure to terminate the pregnancy. At this point, I was in my second trimester. I pay a lot of money for my health insurance, how is it possible that this was not covered? I was told my life must be at risk before they would help me. My "health" insurance did not care about my health, and they certainly did not care about my son's health. They wanted us to be past health, past sickness, they wanted us to get to the point of our lives being threatened by death before they would move to help us. I wasn't willing to wait until my life was at risk or wait until my little boy slowly and painfully died inside of me. The time in which they wanted me to wait was costing my body untold resources, costing my mind untold anguish, and hammering nails into my broken and bleeding heart every day that I knew I wasn't helping my son. It was all adding pain to my husband, and slowing down our healing process so much so that we couldn't be the best parents we could be to the little girl we already had. I wasn't willing to do that. I knew doing that was not the right thing. I felt like my choice as a mother, as a wife, as a woman, was all being taken from me.


So I chose to pay out of pocket and found a center where I could be taken care of. This was a surprising challenge, even here, in the state of Maryland. Imagine if I lived in a different state. I can't even think of it.

The center we found, although they did their very best, was horrible. So many women needing help, so little funding to allow these women to get the care they needed, the care they deserve, in a respectful, comfortable setting. Crying my eyes out as I said my goodbyes to my little boy--Jack, I changed into a hospital gown cold and alone in a tiny broom closet. They put my personal items in a used plastic grocery bag.


This is how my country treated me. This is how my country cared for me and my son and for my family when we were sick and needed help. This was the only choice I had. There was no comfortable hospital room, and no nurse to bring me a glass of water. my husband was not allowed to be there holding my hand when I needed him the most. I felt as if I was being punished, but I don't know why. I know we made the right choice, I know we made the only choice we had that was fuelled by a deep love for our son and for each other. All I could think of was how good I had it compared to those who have less than me. And yet this "good" was a terrible torturous experience compared to what it should have been--a caring medical procedure in a clean and comfortable setting where I could receive the strength, comfort, and support of my loved ones. where my medical insurance covers costs without expecting me to first be on my deathbed. This is wrong. This must change. I know I deserve better. I know my son deserved better. I know my family deserves better.


We planted a memorial tree for my little boy next to the tree we planted for his grandmother. I know he is at peace, and I know he is no longer in pain. I know without a doubt that we did the best thing for him. I was just crushed to discover that being the best mother you can be, is a right that is being taken away from us. I had to fight harder than I should have to be able to do the right thing. This is a problem. I don't wish for any mother to find themselves in that position. Ever. Please, keep fighting for women and fighting for families and fighting for our ability to choose what we as mothers know is best.


I'm happy to report we are pregnant again! Wish us luck and love in our continued parenthood journey.


I lost you.

I don't really know how. Or maybe it's why.

Maybe I will never really know why. It just happened.

You were here.

You were almost mine.

You were almost ours.

Now you're gone.

Lost.

One day you were here.

Then you weren't.

I can feel your absence. Just as I felt your presence.

I know others don't believe me, or understand, but I knew you.

I know you knew me.

I know who you were and who you could become.

I know you were my son.

My lost son.

My lost little boy.

I lost you.

I don't know how. Or maybe it's why.

Now you're gone.

Lost.

Am I lost too?

Have I lost a little bit of myself with you?

Does a little bit of each mother die with each son?

I lost you.

And maybe a little of me too.


Update: Our second daughter was born happy and healthy in Feb 2021.


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