What It’s Like to Breastfeed a ‘Heart Kid’

Written by Sara McCall

February is American Heart Month. Messages this month often focus on how to prevent heart disease. While this is important, what about those families whose heart problems begin at birth? Our volunteer Amy generously shared her experience with us on what it was like to breastfeed a “heart kid.” Read on to see how she beat her own unique Booby Traps® and helped other families in the process!

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“We hear a small murmur, so while you’re in recovery we’re going to have the pediatrician take a listen. It’s probably nothing; these things tend to fix themselves.”

“Did they tell you he has a murmur? It’s probably nothing.”

“You know he has pretty loud murmur, right?”

“While we were examining him in the nursery, something wasn’t right and we are worried about his murmur. We’re transporting him to Akron Children’s, to the NICU.”

“Your son has a congenital heart defect called Tetralogy of Fallot, and will require open heart surgery before his first birthday.”

 

This is how my relationship with my youngest son began in 2011. What should have been a happy occasion, ended up being one of the most challenging and terrifying experiences of my life. But today, I want to paint a picture today about the challenges, possibilities, and rewards of breastfeeding a ‘heart kid’.

You see, his NICU was in a different hospital a couple of miles away, and as I was recovering from a c-section, the birth hospital would not discharge me.  When they first whisked Wyatt off to the NICU, I immediately asked my nurse for a breast pump. I’d never used a hospital-grade pump before, so I asked the nurse for some help.  Her response? “Just put the thing on your tit and push the button; it’s not rocket science.” I will never forget how cold she was.  Thank goodness we live in an age where everything is just a Google away, so I found some YouTube videos and mommy blogs, and kind of went from there. The NICU sent over small vials for me to collect colostrum to send over to him. The birth hospital allowed me a kind of “hall pass” so I could go visit.

My newborn was in the NICU, and I could only visit.

Starting out

I was grateful they had an IBCLC on staff at the Children’s NICU, but being that Wyatt was born the day before New Year’s Eve, my contact was limited to a quick 5-minute meeting showing me how to use that hospital’s pump (it was different than the one at the birth hospital) and a handout with a pump schedule.  They placed an NG (nasogastric) tube because, despite the fact I was pumping, my milk supply was not adequate enough for their feeding schedule, so he did have to take formula. The purpose of the NG tube was to avoid artificial teats (which they gave anyway, despite our wishes). In order to increase my milk supply, I pumped. And pumped. And pumped. Every three hours, around the clock, for the first few days my baby was earthside. The day they discharged Wyatt from the NICU, I woke up engorged, sore, and thankful.

Despite the rocky start, my milk supply was not only adequate, it was filling my freezer and my baby’s belly, and big brother (20  months old) would even have milkies out of his sippy cup!  When they admitted Wyatt to the hospital at his 12 week cardiology checkup due to low oxygen saturation caused by the heart defect, the nurses told me about donating breast milk because they were tired of their freezer filling up so quickly. Since I was very, very lucky to have such an abundant supply, I was more than happy to share.

Wyatt before heart surgery

Wyatt, pre-surgery

Mending his heart

At one day shy of twelve weeks, they decided Wyatt could not wait any longer, and took him from us to the operating room, where the surgeons repaired his tiny heart. During the almost eight-hour operation, I paced. I cried. I fretted. And I pumped. And pumped. And pumped. Wyatt had latched on when he was a few hours old and aside from our brief separation in the NICU, we breastfed up until 3am the day of his surgery. I pumped with the belief we would continue our breastfeeding journey after his surgery.

Wyatt, after heart surgery

Wyatt, post-surgery

I was unable to hold my baby for several days. Therefore, I continued to pump and fill up the freezer, this time in the PICU. I took jars of milk home to fill my own freezer. My husband and I bought a stand-alone deep freeze. I continued to give milk to other families. Anonymous donations, direct donations to a family who had adopted a newborn – I had plenty and they needed it. It was how I coped with the trauma of seeing my baby intubated, with wires and tubes everywhere, IV lines running across his body, monitors beeping, and doctors and nurses running in and out of the room.

A new start

Wyatt was fed via NG tube again, this time completely unconscious. It took several days for him to tolerate feeds, before his tiny body started to work properly again.  After a full week, I held my baby but I still could not breastfeed him for fear of him becoming “tired out” (editor’s note – we know that’s a myth!!). The hospital insisted on continuing bottle-feeding after the NG tube came out. Finally, I was able to breastfeed him. Since he’d first been completely unconscious for several days, then fed by bottle, I was so absolutely worried he would have forgotten how to latch, or that he wouldn’t be interested. To my delight, and I’d like to think his, he latched right on and we picked right back up where we left off.

breastfeeding after heart surgery

I kept him as close to me as I could, and we enjoyed a successful breastfeeding relationship for over two years.  We made it through the NICU; unsupportive and unavailable healthcare helpers; a week-long hospitalization; an eight hour open heart surgery; a week-long hospital recovery (during most of which he was sedated); recovery in the PICU; bi-monthly, then monthly, then quarterly cardiology visits; and two-hour-long echocardiograms – on top of the other challenges that breastfeeding presents.  We made it.  We did it.  And, now we want to help other people make it, too.

You may not have these same challenges; I really hope you don’t – I wouldn’t wish this on anyone. But, I encourage you to face your challenges. Ask for help. Most of all – be your own best advocate for you, your baby, and your breastfeeding relationship.  You got this, Babe. We’ve got your back!

Wyatt, 2016

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2 Comments | Last revised on 02/14/2017


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2 Responses to What It’s Like to Breastfeed a ‘Heart Kid’

  1. Krysta says:

    Fellow ToF mom here! Only my guy is the world’s oldest Blue Tet Micropreemie. 27w, 590g (1lb 4oz) 5.5 months in the NICU, 2 heart caths and 2 OHS… so far.
    We also tube fed until 5mo, it took 2 weeks to transition to fully latched as he was to weak for bottles (how is that for disproving the “bottles are easier” myth!!)
    We had tons of booby traps too, but we made it! He nursed until 15mo, when pregnancy made it to painful (FYI I have 2 HH girls and a HH boy due in April)
    My guy turns 7 in March.
    🙂

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