‘Your daughter’s heart will have to be stopped to repair it.’: Mom shares daughter’s diagnoses of VSD, Aorta Coarctation, thankful ‘her surgery is just a distant memory’

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“’Would you like to hold her?’ I looked down at my almost 4-month-old baby girl asleep in her ICU bed covered in wires, a full day after she underwent open-heart surgery, and just broke down.

My daughter, Lilly, was born on June 17, 2019. The day after delivery, her pediatrician came into the hospital room to perform her first checkup. When he listened to her heart, the pediatrician told us that he heard a heart murmur. I was immediately worried but, he informed my husband and I that heart murmurs heard in the first few days of life are extremely common. He said he would come back the next day and listen again.

The next day, the pediatrician came back. Just as he suspected, and to our huge relief, he didn’t hear the heart murmur anymore.

Thank goodness, I thought. There’s nothing wrong with my sweet, baby girl.

baby watching a tv under blanket
Courtesy of Lisa Iacoletti

The first two months of Lilly’s life were, surprisingly, relatively easy. Lilly didn’t complain much, and she slept a lot. Feedings were difficult; she would fall asleep halfway through, and not take in much at one time, but I figured this was normal newborn behavior. She was very small, but I didn’t think anything of it. Neither my husband nor I are very big, so I figured it was perfectly normal. She was weighed at her pediatrician’s office at 2 weeks old and, although she was below the curve on weight, the doctor wasn’t concerned. She was only 2 weeks old, after all, and she had plenty of time to get bigger.

When Lilly turned 2 months, we took her back to the pediatrician for her next checkup. She was weighed again, and we were told that she was still under the curve. Her pediatrician seemed concerned this time. He went about the rest of her checkup and listened to her heart.

‘There’s a heart murmur.’ He stated.

You mean, the heart murmur that disappeared? I was upset. What was going on with my baby?

Lilly’s pediatrician referred us to a pediatric cardiologist, and I made an appointment for that same week. I am a cancer survivor and, since my diagnosis, I don’t like to sit on medical worries if I don’t have to.

A few days later was Lilly’s cardiologist appointment. My husband offered to go with us but, I told him no since he had just gone back to work after paternity leave. This was pre-Covid, so he was working at the office full-time. In hindsight, I wish Paul had been there with me.

When Lilly and I arrived at the cardiologist’s office, there were only two other families there. We were called back pretty quickly after checking in.

The nurse that brought us to the exam room told me to strip Lilly down to a dry diaper so that she could get her vitals. She would also perform an EKG before the doctor arrived. Standing there while my baby was hooked up to the EKG wires was disturbing. She was so little, and I could barely even see her under there. I thought Lilly might get fussy during the test but, she slept right through it.

baby hooked up to wires for EKG
Courtesy of Lisa Iacoletti

When the cardiologist came in, he said that he would perform an echocardiogram, also known as a heart ultrasound. I sat down on a chair next to the exam table and the doctor placed Lilly on the exam table on top of a receiving blanket. I don’t really remember any of the conversation that occurred during the scan; all I could think about was how my daughter was way too young to be doing any of this. I just held her little hand and periodically stroked her head. That EKG seemed to take forever. I remember feeling so antsy and I kept looking at the time on my phone.

‘Okay, we’re all done.’ The doctor wiped off the probe and placed it back into the holster on the ultrasound machine. I leaned in closer to the exam table, eager to hear about how beautiful my baby’s heart looked.

‘I have two things to tell you.’ Well, that’s a strange way to tell me that my daughter’s heart looks awesome.

The cardiologist proceeded to tell me that my 2 month old baby had a Ventricular Septal Defect. He explained that a VSD is a hole in the heart between the right and left ventricles. I was completely stunned. There had to be some mistake. He saw that I wasn’t speaking and tried to reassure me by saying that these holes are common.

Yeah, but why my kid?

I just kept thinking about how much I wished my husband was there with me to hear this. I had been so stupid telling him I’d be fine taking her alone.

I don’t even remember what the second thing the doctor wanted to tell me was, to be honest. Something about medication. All I could think was that there was something wrong with my sweet girl, and I didn’t know why.

‘I forgot to take my pre-natal vitamin a few times.’ The doctor looked at me with kind eyes. ‘Is this my fault?’

‘No, of course not. These things just happen.’ I liked this doctor, but this was one thing that I wasn’t going to feel better about.

Lilly was put on two different medications: one to help with inflammation around her heart and lungs, and another to help strengthen her heart. The hope was that we could strengthen her heart enough to where it would grow around the VSD and close it. We were trying to avoid surgery at all costs. He also told me to thicken Lilly’s formula so she could get more calories per feed and start gaining weight.

The next month was a blur of cardiology follow-ups, difficult feedings, and stress. Now that I knew the difficult feeds weren’t normal, I grew increasingly frustrated. And Lilly still wasn’t gaining enough weight.

Finally, at Lilly’s fourth follow-up with the cardiologist, after we had already gone up again on calories with no weight gain to show for it, I had had enough.

‘Can we just do the surgery?’ Of course, I didn’t want to put my daughter through that but, it beat continuing to watch her health suffer.

It was decided then that, since continuing to add calories was only delaying the inevitable at this point, she would be scheduled for surgery that next month.

A few weeks later, we took Lilly to her pre-op appointment at the hospital. Her cardiologist had referred us to the best surgeon he knew who happened to be the Chief of Surgery at the hospital. During the appointment, Lilly needed to get a chest x-ray and tons of bloodwork. I’m not sure what I was expecting, but I just didn’t think that Lilly would have to go through all that. I mean, it makes sense but, I was so done watching her suffer at that point. For the chest x-ray, I had to help pin Lilly’s arms behind her head, and she did not like that one bit. As soon as they removed my protective apron, I broke down. I hated seeing my daughter upset. Honestly, it makes no sense that such small humans need such scary things done to them.

After the chest x-ray, Lilly needed some blood drawn. I almost punched the nurse, so I had to step outside. I just kept pacing the hallway with my hands in fists.

If I can’t handle this, how am I supposed to handle the actual surgery? I felt shame.

Finally, all the tests were done, and it was time to meet the surgeon and talk about the surgery. The surgeon walked in and had a very calming presence about him. He actually took ten minutes before even getting into the surgery just to get to know my husband and me. He asked us how we met and when we moved to the area. It was nice that he was interested in us, and not just my daughter’s heart.

We learned that the repair for Lilly’s VSD would involve placing a patch over the hole made from bovine pericardium.

‘She’s going to have a piece of cow in her!’ I blurted this out, desperately trying to lighten the mood. I’m not sure how much it helped, but I got a laugh from the surgeon.

The worst part of this meeting came just after when we were told that our daughter’s heart would have to be stopped in order to perform the repair.

Stopped. As in, not beating.

I honestly stopped listening at this point in the conversation and can’t remember the rest. How could such a small heart already have to stop beating? All I wanted was for them to just stop mine instead. I’ve never felt that before in my life. I wanted them to take my heart to fix hers. Her heart would be stopped with a potassium and electrolyte solution which would stun the heart and stop it just long enough to perform the repair before the solution wore off and her heart started up again. I was reassured countless times that her heart would restart.

When the pre-op appointment was over, we went home. Lilly got so many snuggles that night.

About a week later was her last cardiologist appointment before surgery. This was just to look at her heart one last time and make sure everything was still the same. I wasn’t worried at all. The doctor came into the room to do the echocardiogram and my husband and I sat close to the bed where Lilly was laying. I shared with the doctor how glad I was that she was getting surgery to fix her heart. Then, I saw the cardiologist’s face fall a little.

‘What’s wrong?’

We had to wait until the echocardiogram was done to discuss the results but, now I was worried.

The cardiologist informed us that Lillian now had an Aorta Coarctation as well.

Are you fre*king kidding me?

A coarctation of the aorta means that part of the aorta is thinner than the rest of it which makes it hard for blood to pass through. Lilly’s coarctation must have developed slowly which is why the doctor hadn’t caught it before. Unfortunately, aorta coarctations are not something that can be fixed with medication; they require surgery. So, now my sweet, baby girl had two heart problems that needed to be fixed. Cue the anxiety.

Lilly’s cardiologist told us that, since she was already having surgery soon, he would tell the surgeon to go ahead and fix both problems at the same time. This was wonderful news because I definitely did not want my baby going through surgery twice. In addition, since there were now two serious problems to solve, her surgery needed to be moved sooner.

And so, Lilly was scheduled for surgery the very next week. She would go into surgery on a Friday and stay in the hospital, at least, until the following Friday. Maybe longer depending on her recovery. We were told that she would probably need to stay in the Cardiovascular ICU for four to five days.

This was the hardest week of my whole life. I suffer from Dissociative Disorder, meaning that, when things are particularly scary or emotional, my brain just focuses on something completely different. As strange as it sounds, I spent most of that week trying to boost my following on Instagram. I was obsessed with it because my brain just couldn’t handle my baby’s heart being cut open.

This brings us back to Lilly’s ICU nurse asking me if I wanted to hold her. She had been in the ICU for 16 hours, but she was doing so well that they were about to move her up to the recovery floor. When the nurse told me that I could hold my baby, all of the emotions that I had been hiding from just flooded out of me. I didn’t even feel the lump in my throat that happens before you cry. All of a sudden, I was completely broken down and sobbing. I sat on a chair next to the hospital bed, held Lilly close to my heart, and just kept telling her how beautiful and wonderful and strong she was. My little trooper.

baby with heart surgery scar
Courtesy of Lisa Iacoletti

It’s been almost 2 years since her surgery now and, it’s like the surgery never happened. Firstly, her scar is so thin that it’s almost invisible, but Lilly is so active and fun. The surgery did not delay her one bit. Her surgery is now just a distant memory. My little girl is perfectly healthy and happy. She is the light of my whole life.

This story was submitted toLove What Mattersby Lisa Iacoletti, Co-host of The Imperfect Mom’s Club. You can follow her journey on her podcast, Instagram, and Facebook. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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