“My husband felt something was amiss. ‘Nothing’s wrong!’ I said. Soon after we were living our nightmare.’: Mom of baby born with congenital heart disease says ‘you must be their advocate’

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“My mom gave me the most important advice I would receive as a new parent. She looked me dead in the eye and said, ‘Remember this. Be an advocate for your child. You have all the power. You know them best.’ I held my daughter, Quinn, when she was a little over a month old and gazed over her tiny face. The thought never occurred to me and suddenly I felt myself worrying. What if the time came and I didn’t know what to do? What if I mess up? When would that moment arrive? Was I ready for it? Four years passed as we watched our happy, healthy daughter flourish; the moment never came.

Little did I know my journey in becoming a fierce advocate would actually come with our second daughter, Indiana. Around my 20-week pregnancy scan, I watched the tech try to take numerous pictures of a particular organ on our baby. I realized it was the heart and did my best to remain calm for the rest of the appointment. Later, I received a call from the neonatal specialist who said Indiana’s aorta was enlarged and there was a bright spot on her heart. I remember hanging up and standing in the kitchen with my face buried into my hands, shocked and confused about how this could happen.

A few weeks later and after an hour-long ultrasound at Boston Children’s Hospital, the pediatric cardiologist looked over the scan. ‘So, there are no genetic markers such as Down syndrome or congenital heart disease found. I did not see a bright spot. And as for the aorta, it may end up not being an issue at all. She may just grow into it! Think of it this way – it’s like having a genetic trait such as having freckles. I doubt you have anything to worry about.’ She added we could ask for an echo after birth, just to double-check it was indeed a non-issue.

‘She could have a heart murmur but they have ways of managing that and there are a lot of people who live long lives with it,’ I suggested in the car, optimistic and looking forward to the remainder of the trimester.

Alex, on the other hand, is a ‘prepare for the worst, but hope for the best’ kind of guy. Each check-up, he would ask about it. He pushed me to keep asking our doctors about it. Mothers are better known for their intuition, but fathers have it too. Even though some of the finest medical professionals in the world weren’t overly concerned at this point, he could not shake the feeling something was amiss. It hung in the back of his head for the rest of the pregnancy and made sure I didn’t fully forget it, even if I was relieved by what we were told at that point.

Indiana was born on April 17, 2019, weighing in at eight pounds, four ounces, and an APGAR score of 9. She was perfect and I marveled over how lovely she was, taking in her sweet baby smell and running my finger over her tiny hands. Still, Alex was not swayed by her appearance. ‘Don’t forget to ask for the echo,’ he reminded me gently.

I nodded. ‘There’s absolutely nothing wrong with her. She looks so healthy and pink, it’s all behind us now.’ Unbeknownst to us, this would be a life-changing echocardiogram.

Courtesy of Lacey Sakash

We found out Indiana was born with several congenital heart defects – a 7.5 millimeter wide ventricular septal defect, pulmonary valve stenosis, and an atrial septal defect. She would require open-heart surgery to repair the defects and would have to see a cardiologist for the rest of her life. If it wasn’t for Alex’s gut feeling and push for the echo, we would have taken our daughter home, unknowingly riddled with heart issues. Alex and I were living a parent’s worst nightmare: our daughter’s life was on the line and we would have to do everything possible to keep her above water until surgery.

Courtesy of Lacey Sakash

For the next three months, she would be on a rigorous schedule of feeds and medications to manage the symptoms of her CHDs. Indiana would receive two medications, with one in particular called Lasix. This medication helped with the extra blood that was flowing through the holes in her heart and trickling into her lungs, making it difficult for her to breathe. Indiana struggled to drink one or two ounces a feed and slept more than a newborn should because of her heart working overtime and leaving her exhausted. Despite our best efforts, Indiana was deemed a failure to thrive, heading into congestive heart failure, and surgery was moved to July 22, 2019 – three months ahead of schedule.

Courtesy of Lacey Sakash

You know your child best. The words echoed in my head as we stepped into our daughter’s PICU room, holding bags filled for a weeklong stay. My husband sat down, checking in with Quinn back home, and I got to work. I took a blanket from home and placed it across the side table. Gently, I put several of Indie’s wubbanubs on top, along with several other toys. On the chair next to it, I put another soft blanket and a lamb with a heart glued on its chest, a special gift given from my parents as a good luck charm. I would put more blankets, stuffed animals inside Indiana’s crib, and hang toys where she could see them later on. I felt very strongly if I made that room comfortable and look like a home away from home, it would help with Indie’s recovery.

Courtesy of Lacey Sakash

Alex did his very best bouncing between us staying in the PICU and being home with Quinn. We knew how difficult it would be for her so Alex made sure he was home as frequent as possible. I barely slept, watching the monitor that was recording her oxygen, heart rate, and respiratory sats all day and night. When it was time for rounds, I sat in with questions for the team, serving as an extra pair of eyes if they missed anything important while away. I did the bathing and changing of diapers, gave her scheduled over-the-counter pain medications, and anything else I was allowed. The nurses jokingly asked if I was looking for a job and I smiled, commenting I would do it all for my children.

Courtesy of Lacey Sakash

When asked if we wanted to leave the room before Indie was extubated from the ventilator, we stayed at the end of her bed. When asked if we wanted to leave the room before her chest tube was removed, I stood at her head and Alex to the side of her. When asked if we wanted to leave the room before her arterial and central venous lines were removed, we held her hands. Alex and I provided a voice for her and leaving during the difficult moments was not an option. What followed was an incredible recovery — Indiana was out of the hospital in a record-setting FOUR days. She blew through each milestone with flying colors and we were thrilled to have her back home with us, thriving after her successful repair. Despite advanced medical intervention, surgery is not a cure for congenital heart disease and there would always be a higher risk of Indiana being hospitalized again in her lifetime.

Courtesy of Lacey Sakash

In December 2019, Indiana ended up in the emergency room and diagnosed with RSV, a respiratory virus, and Bronchiolitis, a lung infection. A typical ‘runny nose, fever, and cough’ virus for heart-healthy kids is more likely to send children and adults like Indiana with CHD into the hospital. I watched as they placed an oxygen cannula under her nose after her oxygen stats plummeted. Anytime she took a bottle, Indie threw up all over the floor (and on occasion, myself). They did deep nasal suctioning where a thin tube would go into her nose, down her throat, and try to suction the thick, sticky mucus out of her lungs. She yelled and struggled, trying to fight the nurses off and I did my best to soothe my girl. A terrifying part of this ordeal happened in the middle of the night. She had stopped breathing in her sleep, twice, and I quickly jumped from my bed, almost slamming the side railings down to put my hands on my daughter. I hovered over her as the nurse turned off the alarm, accessed Indiana, and offered me words of reassurance that this was ‘normal’ for RSV before leaving the room.

Courtesy of Lacey Sakash
Courtesy of Lacey Sakash

You have all the power. You have to advocate for your child.

Indie barely slept that night and earlier, I had told the nurses to finally back off with the suctioning. Her skin was incredibly pale and her lips went dusty rose at one point during the last suctioning treatment. Those beautiful blue eyes of hers were looking at me, hollow and exhausted. My gut told me if we stayed there any longer, she would not get the care or sleep she needed to recover.

Courtesy of Lacey Sakash

‘Let’s go to Mass General. Now,’ I said in a voice almost unrecognizable from the hoarseness of no sleep and pure anger. My daughter needed me to speak up for her.

Soon after, my husband walked into a chaotic room, his eyes widening at the people all talking at once or running around with paperwork. The paramedics arrived and Jill, the lead paramedic, immediately took hold of the situation. She ordered the entire room to be quiet, assigning duties and picked up the pace to leave. It was the first time I felt like Indiana was going to be okay because of Jill’s commanding yet comforting presence over the group. I will never forget her and am grateful that we had her in our corner that day. I rode in the ambulance for the first time, sitting next to Indiana and speaking to Jill about what had occurred before they arrived.

Courtesy of Lacey Sakash

During her stay in the Mass General Hospital PICU, Indiana was on a ventilator for six days. Once again, I decorated her room to look like home and made sure Indiana was surrounded by all her favorite stuffed animals for comfort. For treatment, she had to receive countless deep nasal suctioning, and other times, the respiratory therapists would bang on her chest to break up the mucus. I stayed up most of the week, supplied with lots of coffee and snacks thanks to Alex, and watched the monitors closely. When rounds would come around, I would be there armed with my notebook and questions for the medical team. I was hands-on with about 95% of her patient care, reattached her heart monitor wires when she ripped them off and if her oxygen was low, I would make sure the tubing of the ventilator was not twisted or I’d stick her cannula back under her nose. After a week she was back home with us, coming away with asthmatic flare-ups called ‘twitchy lungs.’ It’s treatable and thankfully there is no need for intervention at this time.

Courtesy of Lacey Sakash
Courtesy of Lacey Sakash
Courtesy of Lacey Sakash

Indiana was born a warrior. She is a force of nature and her strength in the most difficult of times is so inspiring. It is from this inspiration where I get my drive to advocate for Indie and her 40,000 brothers and sisters born with congenital heart defects every year. My advocacy journey started from Indiana’s diagnosis and because of her, we are planning the launch of the Massachusetts state chapter for Conquering CHD in September 2020. Conquering CHD is a nonprofit organization dedicated to ‘conquering congenital heart disease’ through raising funds for research, spreading awareness, and supporting communities affected by CHD on a national level and I am so proud to be a part of this organization.

Courtesy of Lacey Sakash
Courtesy of Lacey Sakash

I believe the work you put into the care and comfort of your child changes their recovery rate. If your child is going to be staying in a hospital room and it is allowed, decorate it with all their favorite things from home. Take part in their daily patient care. Who would you rather take care of you if you were a child — a nurse (qualified, but a stranger nonetheless) or your parent or loved one? Attend rounds and ask questions. It shows you are paying attention. Go with your parental intuition. That ‘gut feeling’ – my husband proved from the very beginning it works. I end this by taking a page from my mom’s book and give parents out there my best advice.

Remember this. You know your child best. You have all the power. Give them a voice. Speak up. LOUDLY. You may end up saving your child’s life.”

Courtesy of Lacey Sakash

This story was submitted to Love What Matters by Lacey Sakash from Boston, MA. You can follow her journey on Facebook and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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