Faces of T18

When you google Trisomy 18 images, you get a hodgepodge of personal photos and medical photos. When looking at these results, my brain gets overloaded. Somehow, this mix of images makes it easy to forget that these are babies that we are talking about. Human babies with beating hearts, with working brains, with parents that cherish them no matter what may come. They are reduced to a diagnosis – a horrible, destructive chromosomal disease.

I’m going to put this out there – and it’s the naked truth – I’ve been afraid that I won’t love my baby as much if he’s disfigured. If he has a cleft lip or his ears are low-set on his head or if his occipital area is very prominent (common with T18) or his jaw is recessed. Those of you not facing this diagnosis might think that makes me a monster. What kind of mother wouldn’t love her baby just because he wasn’t perfect looking? But the fear has been there. And partly I think, it’s because I look at this mishmash of pictures on Google and start to forget the humanity behind them. I see the disfigurement, the difficulties, the ugliness of the disease. I don’t see the loved and cherished baby, the long hoped for miracle desperately wanted by his or her parents.

And then I had an epiphany last night while reading my thousandth article on T18. This isn’t some random baby. This isn’t some picture in a medical textbook. This is MY baby. The baby that I have grown inside me for the past 7 months. The baby that I have felt kick for the past 4 months. The baby that indeed, I feel wiggling now as I type these words. The baby that I have seen in my  mind’s eye growing up alongside his sisters.

It wouldn’t matter what my baby looked like. I would love him as helplessly as every new mother has loved her child. I will love him as helplessly as every new mother. I will marvel at his tiny hands, his rosebud lips, his fuzzy (red?) hair (they’ve already seen hair on his ultrasound – if you would like a heartbreaking detail). I will memorize his face, his smell, his fingertips, his toes. I will know his coos and cries from any other baby. My heart will break with the love I feel for him and that love will never be diminished by anything.

He is MY baby, and I will love him more than anything in the world. He is not a diagnosis. He is not a chromosomal abnormality. He is my son, my baby.

I have joined several Facebook groups for Trisomy parents, and these are their beautiful babies.

 

Left: Averi, 14 months old, thriving.

Upper right: Lily, died from complications of pulmonary hypertension at 5.5 months, 6/24/2016

Lower right: Rosalie, 15 months, undergoing surgery as we speak to place a G-tube and remove her tonsils

Left: Gabriel, 7m old – full trisomy 18

Middle: Aaron 6y old – full trisomy 18

Right: Skylar, few weeks old

Left: Ava

Middle: Addalyn, 15m old – partial T18

Right: Lena, 2.5y old – full T18

Left: Caroline, 18m PT18

Right: Gavin, 28 weeks in utero

Maverick

Maverick

Geovannie

Geovannie, lived a few hours 2/26/2016

Nate 15m mosaic.jpg

Nate, 15m – originally diagnosed as full on amniocentesis, post-natal diagnosed mosaic.

Araya 15m

Araya, died at 15m

Zoe 17m FT18.jpg

Zoe, 18m FT18

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2 thoughts on “Faces of T18

  1. In my current job, many of our residents have chromosomal abnormalities. Some of the them have multiple ones that don’t have a name, just a mix of letters and numbers that tell where the problem happens on the DNA. Most of them look “syndromy” (if that is a word) if not physically deformed/disabled. And they are all individuals with personalities, no matter their looks or cognitive level. Initially, some of them are quite…striking. But when you get to know them, they are people. They are individuals who were born at a time that you gave them away. Some have family that come and visit regularly. Some have no family whatsoever. You will love James for as as long as you are blessed to have him. We really don’t know how long we will have any of our loved ones. You just are in the unfortunate position of knowing ahead of time that the statistics behind this genetic trait will likely limit that time. Love you much.

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  2. I started reading your blog yesterday, my daughter’s baby has been diagnosed with Trisonmy 18 and I am trying to learn about it and get to understand how it feels in order to hel my daghter. It’s heart breaking. Thank you for being so honest and describe how it feels. It’s only been a few days and I am starting to understand what you experienced. Bless your heart.

    Liked by 1 person

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