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When We Got the News Our Baby Would Be ‘0% Fine’

This is written in response to the article called “I got terrifying news that my baby was only 5-10 percent likely to be ‘fine,’” published in the Washington Post on January 11, 2016.

In the fall of 2006, I woke up like any other day and prepared for the mundane tasks of daily life. My husband was traveling for work, and I just had our two boys at home. I had an afternoon appointment at my ob-gyn and thought it would be a fun adventure to have the boys go with me on this trip… because today was the day… the 20-week ultrasound where we would find out if we were having a boy or a girl. Once inside the exam room, I knew immediately that there was a problem when the nurse asked the boys to leave the room and kept playing with the ultrasound machine.

It would be a week later, after seeing a perinatologist and a fetal cardiologist, that we would learn our son had a complex heart defect. His heart was backwards. This heart did not connect to his lungs properly and he probably had a chromosomal issue (which meant he would have a syndrome, which entailed a host of other potential problems). Imagine going to a doctor’s appointment every two weeks where the geneticist comes in to inform you of all the ways your son will have a hard life because of the likelihood of his syndrome. They described how his quality of life would be so poor that they questioned if I was certain I wanted to proceed with this pregnancy.

Imagine hearing those doctors tell you every two weeks that you don’t have to have this baby… that we could always try again.

At every single doctor’s appointment, I had to endure the sad faces of my perinatologist and the nurses, all so heartbroken to see that I was still carrying a baby, a growing baby, with an ever-extensive broken heart.

Then, imagine meeting the cutest fetal cardiologist, who would see your baby every two weeks, look at the ultrasound and uncover additional problems, and tell you, “Don’t worry, we’ll fix that.” Finally, someone who wanted to help this baby as much as I did.

And at every single visit, I held on to the hope our fetal cardiologist gave us.

Yes, my baby had one complex heart, one they wouldn’t even begin to touch at the hospitals in Las Vegas, but instead requiring us to travel to Stanford University to have it repaired. But it was possible, and they had a plan.

I am so thankful for the early detection of our son’s heart defect. I am thankful we had a team of amazing cardiologists working with us throughout my pregnancy (who even knew that was possible?). I am thankful for those who inspired and encouraged us.

Yes, we were having a baby that was definitely 0 percent fine… and you know what? That was OK. We were prepared.

We knew from ultrasounds that his heart was a mess, and likely pointed to a condition called DiGeorge syndrome. We were urged countless times from the perinatologist to have an amniocentesis to confirm the syndrome, even though this posed a potential threat to the already struggling development of our baby.

We opted not to put any unnecessary risks on our baby, and we researched:

As if he indeed had this syndrome.

As if he would need many heart repairs.

As if he would be 0 percent fine.

On March 28, 2007, I gave birth to a 7-pound, 14-ounce baby boy named Isaac. In order to survive his first day in this world, he was whisked away immediately to have his first heart procedure to open the artery to his heart and allow more blood flow.

His life would be made of happy, awesome days, and days of surgeries we didn’t know if he would survive.

But in the end, we were 100 percent prepared with knowing our son would be 0 percent fine.

The early detection of his heart challenges gave us the knowledge we would need to ensure I got the proper prenatal care. It helped us create a plan for his delivery and for his future heart care. Although the knowledge did lead to a stressful pregnancy, it also led to one with hope and love.

I was optimistic that no matter how long we had our precious son on this earth, we would take every single day and cherish it.

Isaac may have been 0 percent fine, but he filled our hearts with so much love. Statistics are just that — numbers. The reality is, you have to find the joy within yourself and find the love to share, no matter the odds. You can focus on the 0 percent or think of all the ways you can make it 100 percent. Your choice.

For us, we chose hope, love, and the unending pursuit to find joy.

mom with dark hair holding newborn baby
Kathy and Isaac

A version of this post originally appeared on Move Your Mountain.