‘Unless you have a sick kid, you don’t understand. I wish I only had normal fears. I know any breath could be her last.’: Mom of CHD baby worries during Covid 19, ‘Your fears for your child’s health are NOT bigger than my fears.’

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“I am one of those moms. An ignorant mom. I fully admit it. I am ignorant of what it is like to have a healthy baby from birth.

My daughter is a heart baby. She was 1 in 100, who was born with a heart condition. Two heart conditions, but that isn’t the point. We had no idea while I was pregnant that anything was actually wrong. I had a gut pregnancy kind of feeling, but we did not know.

At birth, the heart is the size of a walnut, at the 20-week anatomy scan it is the size of your thumbnail. We knew that she was not growing as she should the last month of my pregnancy. I was induced and she was born with a dream birth. She was a healthy size. We had a blissful 16 hours with her.

Then, her saint of a pediatrician came in and took one listen to her heart and with midwestern politeness, demanded the nurse send her for an ECHO. I had no idea that 1 in 100 babies were born with heart conditions, nor that most of them required open-heart surgery before their first birthday for them to survive. I had no idea that open-heart surgery could be done on an infant. No idea that it is usually genetic. No idea. But that changed quickly.

It was like a movie. I think that everyone has a moment in their life like that. My husband had gone home to check on the dogs and to catch a nap. My breakfast came back before my baby and the nurse asked where my daughter was. She went to check because it usually did not take that long. She returned with my daughter and two new doctors.

The new doctors were pediatric cardiologists, which is a thing. They said my daughter had a ventricular septal defect and pulmonary valve stenosis, aka a hole in her heart and narrowing of her pulmonary valve. The doctors were short and rude, refusing to return to tell my husband. My husband came back and I cried for the first time. Her condition could wait until she was about 3 months old for surgery and we were allowed to leave.

The only sign she gave of her condition was her slow weight gain. She was in the less than 1 percentile for most of her life. In fact, when she did go in for her surgery, she was considered malnourished. She was a very good drinker, but everything went to keep her heart beating.

Most first time moms understand the fear that your child has stopped breathing and has an inability to not watch their child sleep. It is different with a heart baby. I knew that any breath could be her last. Knew that at any moment her heart could take a turn and just stop. Fear is far different than knowledge. I had to return to work. Work suddenly becomes completely meaningless when you have a child at home that you might not see alive when you come home.

Her surgery was able to be put off until she was exactly 5 months old. I slept maybe 5 hours the week leading up to and in the hospital. The hospital says there are pull out couch beds in most rooms, but we were 0 for 2. Sleeping on a bench and in a chair between pumping sessions and the constant interruptions of hospital life does not lend to much sleep. But she made it! She even rolled over a day after open-heart surgery.

There are several kinds of follow-ups after your child has open-heart surgery. Not just the expected cardiology follows ups, but developmental checks. Before surgery, the only physical sign she gave was her slow weight gain. After surgery, she was still gaining weight slowly. Everything was going well, until COVID-19.

Her 9-month appointment was flat out canceled, and her developmental checks were rescheduled and then canceled. For a normal child, that would be no big deal. For a child who just had major surgery that did not fix everything, those appointments are everything. Obviously if our pediatrician feels that it isn’t worth the risk, we will do what is best.

But here is the thing. Unless you have a sick kid, you don’t understand that. You have no idea that that knowledge that your child could stop breathing and her heart could just stop at any moment, doesn’t go away with surgery. Especially not when the surgery went well but did not correct everything.

When you have no idea if your daughter is gaining weight correctly or how her heart sounds, you become mad at appointments being canceled left and right. Surgery at such an early age could cause developmental delays. Yes, her not getting COVID-19 was the most important concern, but that doesn’t turn the other appointments into the equivalent of a normal, healthy child’s 9-month appointment.

I, as the mom of a baby that was born sick, understand your, the mom of a normal, healthy baby, concerns about COVID-19. It is scary that your child could be perfectly healthy one day and the next on their deathbed. I completely understand! But 10 children have died in the US from COVID-19.

Congenital heart defects (CHD) is still the leading cause of death among children. Not cancer, not car accidents, not COVID-19, not even the flu. Your fears for your child’s health are NOT bigger than my fears for my child’s health.

If you think that your child had COVID-19 do not pass go, do not collect $200. In other words, don’t take your child straight to your pediatrician, urgent care, or the hospital. Call your pediatrician. All you are doing by bringing your child to places like that is spreading around COVID-19 or other germs.

Did you know that during this pandemic, most children are not staying up to date on their vaccinations? There will likely be outbreaks of measles and other diseases that can and should be vaccinated against. Did you know after open-heart surgery, you can’t get certain vaccinations for a time? Meaning that in addition to being at higher risk for COVID-19, my daughter is at risk for diseases that are not currently being vaccinated at the usual and necessary rates.

Yes, I am ignorant of what it is like to have a normal, healthy child.

I wish that I wasn’t. I would give everything to be ignorant of what it is like to have a sick baby. I wish that missing a 9-month appointment was not a big deal. I wish that I didn’t have to hope and pray that my family felt that keeping up to date on vaccines during this pandemic was of the utmost importance. I wish that I only had the normal first-time mom fear that my daughter turning her head in her sleep was going to hinder her breathing, rather than the knowledge that it is highly unlikely that she will make it to her first birthday without major surgery.

I was able to look at my daughter without being reminded that she is a lifelong member of the zipper club. I wish that I didn’t know that CHD was the leading cause of death among children or that 1 in 100 children were born with a heart condition.

I wish I could be ignorant like you.”

Courtesy of Katherine Brodersen

This story was submitted to Love What Matters by Katherine Broderson. You can follow her journey on FacebookDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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