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What the Doctors Didn't Tell Me About My Baby's Heart Defect

Nisha Gutierrez-Jaime
A little girl sitting on floor and holding a red balloon

My Precious Nylah,

They said you weren’t growing at a typical rate in utero.

“Possibly dwarfism,” they said. “It’s hard to tell just yet.”

They said you’d be born with a complex congenital heart disease.

Tetralogy of Fallot,” they said.

They said you’d likely need a life-saving heart surgery immediately after birth.

“Between 1-5 days… depending,” they said.

They said you’d likely need lifelong cardiac care, daily medications and an unforeseen amount of surgeries and procedures.

“It’s hard to predict what it will all entail,” they said.

Nylah in the hospital

Related:A Letter to My Childhood Self Facing a Long Road of Chronic Illness

They said you may have limitations.

“You’ll have to wait to see how she grows,” they said.

They said I had the choice to abort you because of your unhealthy heart.

“Think about it,” they said.

They said your heart would have to be stopped as the surgeon operated on your tiny body, time and time again.

“She’ll be on the bypass machine; there are risks,” they said.

They said your chest may remain open for a few days after surgery, and when I first saw you in the ICU you’d be monitored with wires and needles from head to toe.

“Be prepared,” they said.

They said you would need a pulmonary valve replacement at some point during childhood.

“The time has come, we know she’s not even 2 yet and she has already had two other open-heart surgeries, but she needs this too,” they said.

They said you’d be medically fragile and told us to be very cautious.

Related:Parenting a Child With Complex Medical Needs Is Not a Contest

“Watch her like a hawk,” they said.

But through all of that, there is so much more they didn’t say.

Nylah playing with a red balloon outside.

Related:When My Toddler With CHD Needed a Compression Sock

They didn’t say you’d have the most beautiful curls.

They didn’t say you’d develop a tremendous bond with your daddy after he accompanied you on the life-flight helicopter the day after you were born.

They didn’t say you’d have the rosiest, sweetest cheeks.

They didn’t say you’d always be referred to as, “the happiest baby in the CTICU and CVACUTE.”

They didn’t say you’d take your first steps four days after your third open heart surgery.

They didn’t say you’d handle your monthly echocardiograms with little to no fuss, and instead mostly coos, smiles and giggles.

They said it would take 10 weeks for you to heal from surgeries, but they didn’t say because you’re so determined I’d have to physically slow you down.

They didn’t say that the bond your twin brothers have with each other would extend into a beautiful bond with you.

They didn’t say I’d paint your tiny toes while you slept.

They didn’t say you would become a source of inspiration to your family and friends.

They didn’t say you’d love strawberries and smell like them often.

They didn’t say you’d fight to conquer your congenital heart disease with impeccable grace.

They didn’t say your sweet voice would be music to my ears.

They didn’t say you would thrive, and they forgot to mention you would survive.

I love you. Happy 2nd Birthday, my brave girl.

~Mama

Read more stories like this on The Mighty:

To My Heart Healthy Twins, Thank You for Being Patient With Me

To My Daughter: Here's What You Won't Remember About Your First 3 Open Heart Surgeries

The Connection Between My Congenital Heart Defect and Tummy Troubles