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One of the {Lucky} 1 in 100

My daughter Josephine is one of the 1 in 100 babies born with a congenital heart defect {CHD}. She is also one of the 1 in 4 of CHD babies that require life-saving surgery within the first year of life. Unlike the majority of babies with a CHD, her heart defect was not diagnosed at or before birth. She passed her pulse oximeter screening because her defect was acyanotic {meaning her blood was still being oxygenated properly}. The murmur was difficult to hear because the hole in her heart was very large. Large holes don’t significantly restrict blood flow and cause the same loud whooshing sound as smaller holes. Her VSD {ventricular septal defect} was not caught until she was almost 3 months of age, and by then she was in heart failure.

I hate to think about what would have happened if it hadn’t been caught when it was. We were lucky. So, so lucky. It may be a strange thing to say when your toddler has a zipper scar in the middle of her chest, but it’s true. We were indescribably lucky.

She had symptoms from the start; we just didn’t quite know what we were looking at. The symptoms are so subtle for her type of defect: constant feeding; falling asleep quickly when eating, but not staying asleep very long before needing to eat again; sweating while feeding; fast breathing; trouble growing and gaining appropriate weight. It was so easy to explain in other innocuous ways, which is what we did. Breastfed babies eat frequently, so intervals between feedings don’t matter. Some babies are not sleepers. It’s hot pressed up against mama all day, so of course she got sweaty often. Babies breathe faster than big people. She had trouble latching, so I had to use a shield for breastfeeding which can impede milk transfer and lead to slow growth. It was so dangerously easy to explain away. CHDs can be subtle and insidious, even when your baby’s heart is literally failing. We were incredibly lucky that the delay in diagnosis didn’t cost her her life.

The day she was diagnosed was a day I will never forget. In an instant, our world was turned upside down. Everything shifted. Everything. But we were so lucky that her pediatrician didn’t just write it off as a musical murmur, and instead decided to send her for an echocardiogram. We were lucky that she had insurance and access to medical care {incredibly expensive medical care that we could not have afforded on our own}. We were lucky that we happen to live in a city with the 2nd best pediatric cardiology and heart surgery clinic in the nation. We were lucky that she was stable after 10 days inpatient, and we were able to go home and wait for open heart surgery until she was bigger and stronger.

We were scared every day, but thankfully, we had friends and family {and acquaintances and strangers} who supported us. We were lucky that we all got to live together at home, as a family, during that period of waiting instead of being split between home and hospital. We were lucky that she sailed through open heart surgery and recovery and was released after only 5 days inpatient. We are lucky that although CHDs cannot be cured, the odds are very good that Josephine will not need another open heart surgery.

Today, my daughter is a thriving toddler. At her most recent cardiology check-up, we were told that they don’t need to see her for a full year! That’s the dream! We are so very, very lucky. There are parents all over the world who don’t have the advantages and access to quality care that we have. There are parents whose child’s CHD story is not a steady climb to health. There are parents who are living without their precious heart warriors.

Being a parent of a heart warrior has not been easy, but I am acutely aware of how differently things could have gone at every step of this journey and cannot help but marvel at how exceptionally lucky we have been, every single day. 

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3 Responses to One of the {Lucky} 1 in 100

  1. Leigh February 14, 2017 at 9:23 am #

    I was born with a VSD as well! I was monitoried by a cardiologist, EKGs, echocardiograms, holter monitors and annual visits. I was 11 when it had to be repaired as my left ventricle became enlarged. Your sweet precious girl! So grateful everything was caught and repaired early! I enjoyed reading your story, makes me realize what my parents must have been going through that they hid so well from me. As a child, I definitely didn’t realize the severity. Now as a mother of three little girls, I can’t even imagine what you have been through! Your daughter is a heart warrior and thank you for sharing your story! You are such a brave mama!

  2. Kristen February 14, 2017 at 5:55 pm #

    This is exactly what happened with my son when he was 3 months old! Very scary and difficult but we are the lucky ones!

  3. Linz February 19, 2017 at 8:20 am #

    My CHD kid is almost 19….he was one of the pioneer kids of pediatric cardiology! Along with multiple VSD- he had many other defects. They caught it within a week of birth and his first surgery was at 5 days old.
    I remember the day they told me…..but it was more of a blur memory, since I was in complete despair. I think I cried for 72 hours straight. Along with being postpartum, I thought this beautiful baby boy was going to die.
    He went through 2 open heart surgeries his first year. He was a very sick baby and would cry all the time until his 2nd surgery at 7 months old…..and then it was like a lightbulb that switched on and he was the happiest kid ever.
    He is now over 6ft tall, smart, gentle and one the healthiest people I know. Just this year- he switched over to a new breed of cardiologist, one for these pioneer kids that are now adults.

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