Lainey’s Story: A Family’s Experience with Congenital Heart Defects and Down Syndrome

lainey had open heart surgery at UVA Children's Hospital to address congenital heart defects
Lainey was born with congenital heart defects and had heart surgery at UVA Children’s Hospital. Her mom, Ashley Havens, contributed this photo.

Ashley Havens contributed this post. Ashley’s daughter, Lainey, is a patient at Children’s Hospital Pediatric Cardiology Richmond, where she receives UVA pediatric care close to home. You can read more at Ashley’s blog, A Bit of Simplicity.   

I’ve always heard about a mother’s intuition and even after having two kids, I wasn’t quite sure if I had one — maybe it was just because I had, luckily, never been placed into a situation where it was triggered. But once I found out I was pregnant with our third child, I was immediately scared. Now, don’t get me wrong, I was beyond thrilled! I had been having baby fever and secretly been wanting to add onto our family for months by the time I found out.

But there was this lingering feeling, throughout the earliest moments of my pregnancy, that something was wrong. It was a feeling I couldn’t shake.

No matter how many smiles I forced, how many hugs I got, or how many times my husband reassured me that everything would be fine — I had an ocean of fear constantly beating me down inside.

The Diagnoses: Down Syndrome and Congenital Heart Defects

It didn’t take long to find validation for my fears. During the first trimester, we found out that our baby (Lainey) had Down syndrome.

As crazy as it sounds, and despite the amount of tears I shed, I found peace in this news. Finally, I knew what that fearful feeling was. Knowing this did not help the feeling go away — it actually added to my fears — but, I was no longer feeling lost in the dark.

I knew what my battle was, what our battle would be.

Or so I thought…

Once we found out Lainey had Down syndrome, the list of problems that could result from that was thrown before us. On that list came the shocking statistic that 50 percent of children with Down syndrome will be born with a heart defect.

I knew this. I was aware of the statistic; but, that’s all it was to me: a number.

Never in a million years, even with the extremely high chances, did I think she would have a congenital heart defect (CHD).

But she did.

At our 20-week ultrasound, amidst my husband’s and my squeals of how cute she was, the technician dropped a bomb on us. She stopped for a moment and we both looked at her. Her face was blank, and she told us that there was something wrong with her heart.

Our minds raced, our hearts dropped, and the appointment was a blur.

The months quickly went by and, after multiple doctor visits, we came to terms with her diagnosis. Lainey did have a heart defect. A couple, actually.

She had a large ventricular septal defect (VSD) and a small atrial septal defect (ASD). Basically, the chambers in her heart were not closed all the way. This would cause her heart to work extra hard to pump the blood throughout her body.

We were prepped on how things would be after her birth, the timeframe for her open heart surgery (which would happen, no matter how scared we were), and the medicines she would be required to take just to keep her body growing and working until surgery.

After Lainey’s Birth

Lainey’s birth was a glorious moment in our lives. She was everything we dreamed she’d be, and more.

Just as the doctors said, you couldn’t tell anything was wrong with her — at first.

She seemed like a normal baby. And, for a second, we forgot about her heart defect.

Then, days went by and slowly we began to watch her struggle.

Her breathing became labored, fast, and loud. We would jokingly call her “our little piggy” because that’s what she sounded like. That was “normal” for her.

But her normal soon began affecting her health. In her first few months of life, she was put on a feeding tube, had three long hospital stays, and had her open-heart surgery postponed three times due to her poor health.

It did not take long before we were hoping and praying that her surgery would come soon. That was never something I saw myself doing: praying for my child to have open heart surgery. But that’s exactly what we did.

Because it was so hard to watch her suffer. Her little body was working too hard, and it was taking everything she had to keep fighting.

And fighting is what she did.

No matter what she went through, she always had a smile on her face. If there was a rare moment that she didn’t — that was our first clue that something was horribly wrong.

Fixing the Congenital Heart Defects: Lainey’s Open Heart Surgery

Then, after 5 months of scares, waiting, and anticipation, her surgery was finally in our sights.

It snuck up on us and happened whether we were ready or not.

Handing her over to the doctors that day, January 30, 2017, was the hardest thing I have ever done. Giving her over to people — who didn’t know her, who didn’t love her the way we did — and trusting that they would take care of her. Trusting that they would fix her. Trusting that she would return to me “better than new.”

It was hard.

Her surgery took over 10 hours.

That was 10 hours of blankly staring at the colorful carpeting of the waiting room. 10 hours of drowning in my own thoughts. 10 hours that miraculously passed like minutes.

Before we knew it, her surgeon, James Gangemi, MD, came out to speak with us. He told us that while they were in there, they had to redo her surgery three times, because they found a leaky valve that also needed to be repaired. He told us that despite all she went through, and how long it took, she was doing great!

Our hearts finally started to feel relief.

The fight was scary and watching her lay in that huge hospital bed with wires hooked to every part of her body was torture, but she began healing so quickly.

Every day, with every bump in the road, she would show signs of improvements. Then, before we knew it, she was awake, smiling, and ready to go home.

We spent exactly a week in the hospital and bringing her home was a bit terrifying. She now had a large scar that needed tending to, medications, and wires in her chest (which, for some reason, freaked me out the most).

Although, once we were home and began noticing her progress, that fear started to slowly slip away.

Eventually, she came off of all her medication. She was still dependent on her feeding tube, and she still has it today. However, after a year and three months of only being fed by her feeding tube, she is finally eating on her own! Which is a huge accomplishment for her.

Lainey is now 19 months old and surprises us every day. Her surprises include spontaneous laughter, genuine kisses, and accomplished milestones (on her terms).

Throughout this whole journey, we have said that everything will fall into place on her terms — when she feels ready and when she thinks it’s right. That is what she has done and still does today.

As hard as having CHD was for her, I wouldn’t change a thing. Her surgery, hospital stays, and medical issues have just shown us how strong she is and how much strength we have as well.

Life doesn’t have to end with a medical diagnosis; sometimes, it’s just beginning.

Comments (2)

  1. Amanda Doane says:

    James Gangemi was my surgeon exactly 6 months ago today. Wonderful team that I couldn’t be more thankful for them in my whole entire life.

  2. A frustrated Aunt says:

    It’s a shame they won’t do surgery is on babies who have trisomy 18. We were told by the doctors that UVA doesn’t do this surgeries on “those” babies. Sending us to Nebraska to do the heart surgery that could be done at UVA. Not happy with our experience but glad yours went well.

Leave A Comment


*