Mother's Intuition is Real: Maeve's Story

Maeve’s first hospitalization at 7 weeks old.

If you would’ve told me 3 months ago that my daughter’s recurrent colds and suddenly-unequal pupils would lead to heart surgery, I probably would have called you crazy. But that’s exactly what happened.

The first time our baby girl, Maeve, was admitted to the hospital for breathing issues, she was just 7 weeks old. Despite my best efforts to keep our January baby from catching any germs, a cold set in. As the mother of then-two-year-old (and illness-prone) twins, I was familiar with baby colds. We used saline, humidifiers, and kept her hydrated. We suctioned when we needed to and let her sleep on an incline. But this cold was… different.

Because of her age, I took her to our pediatrician who agreed that we should keep an eye on it. Later that night, he called to check on her. She’d begun to retract (her chest caved in when inhaling) and she sounded eerily like Darth Vader. “I’m going to go ahead and admit you to the hospital,” he said.

I was taken aback. Our pediatrician is not an alarmist, so I knew that if he wanted us to go, that we needed to go.

This, as it would turn out, was the first of many hospital stays for respiratory issues for our sweet Maeve. Each time, we were left feeling frustrated with hospitalists. (I should mention here that her nurses were amazing and advocated for us in big ways!) Still, her doctors weren’t convinced.

“We can’t find anything wrong with her, so we’re going to discharge you.”

“Her labs look fine. She just has bronchiolitis.”

“Her labs look fine. She just has RSV.”

“She looks fine to me. She just has croup.”

“Her cold isn’t in her chest - it just sounds like it’s in her throat.”

Maeve’s third hospitalization at four months old

Over, and over, and over again, during each hospital stay or ER visit, we were told by doctors that she was fine. That we were being too sensitive. That we needed to get off of Google and stop worrying. But still, something felt… off. Why would a baby get RSV in May? Croup in August? Why does she sound like Darth Vader and cough like a squeaker toy if she just looks at someone with a cold?

In September, it came to a head. I noticed that Maeve’s pupils were two different sizes. I looked back at photos and, to my confusion, they were equal just a few weeks before. What in the world?

Notice the difference in size between her pupils

I sent a photo to a friend whose husband is an ophthalmologist. He wasn’t too worried, but wanted me to bring her in the following week. The next day, Maeve stood up in her crib and looked right into the camera. I thought it was funny and took a screenshot to send to my husband. And then I saw it: her eyes looked crazy. She looked like the Terminator. I immediately texted my friend.

Several minutes passed, and her husband called. “Hey there -- after looking at the photo you sent, I think that Maeve has something called Horner’s Syndrome…” This friend, as it turns out, was a God-send.

The feeling that I had in my gut was unlike anything I’d ever felt before. I knew that something was wrong. I’d been saying it for months, but here was a new development. It’s not that I wanted there to be something wrong with my child -- but the idea that we could have an answer was something that I wasn’t going to take lightly.

After some discussion, my husband and I decided that we would take her to the emergency room in Atlanta - about 2 hours away, but a more comprehensive hospital, in that they had specialists that our smaller town didn’t.

My husband stayed home with our other three children, and my best friend made the trek with me.

Though the ER was packed, we were taken to a room quickly. The first doctor that we saw felt strongly that her eyes were just the way she was born. He was sending us home.

Then, I’m pretty sure I terrified this sweet doctor. In my calmest, but most… er… Grizzly Bear Mom voice, explained that we’d just driven 2 hours, that I knew in my gut that something was wrong, and that we wanted an ophthalmology or neurology consult. I am positive that this man thought I was insane. To be fair, I couldn’t blame him. I’d just (apologetically) spouted off my findings from 6 hours of ferocious Googling, which I’m sure he, an actual doctor, loved. He assured me that everything was fine, and left to get the discharge paperwork. My friend looked at me with wide eyes when he left the room, wondering if I was okay.

Hours passed, and then -- a change of plans. They decided to admit us for testing.

As odd as it sounds, a wave of relief and thankfulness rushed over me. Finally, we’d have answers. Finally, a hospital was taking us seriously. Finally.

Because Horner’s Syndrome is a symptom of something else (essentially, the result of a nerve being compressed somewhere within the body), they worked to find the cause.

The next few days were, in short, terrifying. Words like, “lesion,” “tumor,” and “neuroblastoma” were used more times than one would like -- the focus being on her throat. Could a tumor be the cause of her breathing issues? I was wearing holes in the knees of my jeans from praying.

On our third day there, finally: an answer. No neuroblastoma. Praise God.  But, an incidental finding in her MRI showed that her aorta went in a different direction. The discharging physician assured us that it was no big deal, and likely not what is called a “full vascular ring,” he said -- and told us not to worry. If issues persisted, we could see an ENT.

We requested a cardiology referral, just to be safe. Read: Mother Bear would get to the bottom of this.

On the way home from the hospital, I was thankful, but still confused. Why the sudden Horner’s Syndrome? Why so many respiratory issues? I researched vascular rings and was shocked -- Maeve had almost every symptom. I immediately made a cardiology appointment.

After some back and forth with the cardiologist, we had an answer. Maeve did have a full vascular ring. She had what’s called a right aortic arch, left subclavian artery and a Kommerell’s Diverticulm. Essentially, here aorta went in a different direction. That, along with an extra piece of anatomy she was born with created a full ring around her trachea and esophagus -- effectively choking her from within.

That is why she breathes like Darth Vader. That is why she coughs like a seal. That is why her Horner’s Syndrome developed.

With Kari and Dr. A — she’s only crying because they’d just removed a bandage! She really loves them.

We learned that surgery would be necessary. Given that cold and flu season was upon us, we were eager to have the surgery scheduled as soon as possible.

But… crickets. Weeks went by without a call from the surgery scheduler, and we became more nervous by the day. I was done waiting for the phone to ring. I began looking for alternatives.

With the help of my dad and his colleagues, my husband and I were introduced to Dr. Petros Anagnostopoulos - a pediatric cardiothoracic surgeon with American Family Children’s Hospital in Madison, Wisconsin. From our first interaction with him on the phone, we knew that he was the man to help us. He was so calm. So knowledgeable. He addressed our concerns and validated our thoughts.

Three weeks later, we were on a plane to Wisconsin.

Though our daughter was about to have additional MRIs and a heart surgery, walking into American Family Children’s Hospital was like breath of fresh air after being stuck in a closet for 10 months. Every single person we met was incredible. Kind. Invested. Deeply devoted to healing our daughter.

They developed a course of action and kept us involved. When her MRI scans were clear, they were as relieved as we were. And when surgery day came, they let me go back to the operating room to sing to her until she was under anesthesia. They kept us calm and updated in the hours that followed.

About an hour into the surgery, Maeve’s ENT came to tell us about the condition of her trachea and esophagus before the surgery. The pictures were… alarming. Maeve had severe tracheomalacia and bronchomalacia, meaning that her throat was flat in places where it should be round. And this is when she was healthy. The ENT compared her condition to a tree trunk with a wire wrapped around it: the tree grows, but the wire stays. How much more constricted would her airway have been during her next cold? I was reminded of, and so thankful for, that nagging instinct that I couldn’t shake -- and all of the miraculous steps -- that led us to have her surgery when and where we did. It sounds cliche, but I shudder to think what could’ve happened if we didn’t.

When we were able to go back to the PICU to see her, Kari, one of Dr. A’s amazing NPs, had leaned over Maeve’s hospital bed and wrapped her body around her to keep Maeve calm as the anesthesia wore off. She cared for her as if she were her own. What else, as a parent, could I ask for in a healthcare provider?

What was expected to be a 5-7 day PICU stay was only 2 days. We were amazed. We shook hands (and I cried, because #duh) and hugged everyone who had taken such good care of her. Several days later, after a final check-up, we flew home.

We’re now 13 days post-op, and Maeve is trying her darndest to walk and climb the Christmas tree.

I know that it’s easy to get worked up about the smallest health issue in today’s age. Google can easily turn a toddler’s sneeze into a brain tumor in the mind of a worried mom.

Maeve’s diagnosis was a rare one. Congenital heart defects (CHD) are rare in and of themselves, with about 200,000 cases a year. Of those, 0.5% are vascular rings. That said, I have no reason to be upset with the doctors who didn’t diagnose it sooner.

Many doctors have a saying… “if you hear hooves, think horses, not zebras.” I think this is important. When a child presents with flu symptoms, we should think of the flu -- not of the bubonic plague. But sometimes -- there are zebras. Sometimes, you have to put your mother’s intuition above a doctor’s diagnosis (or, lack thereof.)

Happy as a clam after being cleared by Kate and Kari — we love them!

At the end of the day, you are your child’s best advocate. No one knows your child better than you do. Charts and graphs are helpful, but they can’t always tell a full story.  

All this to say: if you’re concerned about something, then get it checked out. If a child’s symptoms persist -- if something seems off -- if you just have a feeling that you can’t shake -- it’s okay to look into it. It’s okay to sound like a crazy person in front of people who are way more highly trained than you are.

UPDATE: (1/11/2020) Since this post, Maeve has required another heart and airway surgery, this time at Boston Children’s Hospital. She continues to be symptomatic and is scheduled for another major surgery next month.

To follow along and read more posts by Momstrosity, please click here and “like” our Facebook page.