Breastfeeding A Baby With A Congenital Heart Defect

During my first pregnancy, at 25 weeks, we discovered that I had severe early-onset PreEclampsia.  Then, when they did the ultrasounds to check on his growth, a major heart defect that had been missed on the anatomy scan was found.   Our son was born at 27weeks when both of us were headed for a crash.   In spite of the extreme preterm emergency c-section, I got a pump within the first 24 hours.  All I got in the beginning was tiny drops that we sucked up out of the flanges with 1cc syringes.  These tiny syringes would be delivered by my husband to the NICU for my son's feeds every 3 hours.   I ended up setting alarms for every 3 hours and pumping on a strict schedule, clots came, mastitis came and my husband helped to clear them both by very painful massage.  My production increased to the point that I filled a 9cuft freezer from top to bottom. 

In the NICU our son had his ups and downs, slow increases of feeds then a bad day would shut it all down.  Originally the Doctors mixed 3 packets of fortifier per oz in my milk.  After our son had his first heart surgery (cath to place a PDA stent) and he was able to wean down to low-flow (less than 5L of O2), we were able to try oral feeds.   I insisted that I wanted to try latching and that took a little convincing since "breastfeeding is to hard on them", which I had to research and disprove by stating the American Heart Association and the American Lung Association's stance on breastfeeding the Congenital Heart and Chronic Lung Disease child, which he was both.  Our NICU was a 100-bed, open-floor-plan NICU.  We were placed right next to a HUGE window next to the nurses station.  Everyone walked past his spot when they entered the NICU.  This is where I got to attempt to nurse the first time, with only my husband beside me.  I was worried and nervous, knowing that if it didn't work he could end up with a surgically implanted feeding tube and all the complications that that entails.   To say I was stressed was an understatement, that first latch didn't work at all. Neither of us could figure it out.  But we were allowed to try the next day, and that one worked.  After that we dropped on feeding tube feeding per day and swamped it for a nursing session.  

When they place a feeding tube and before they start a new tube feed they check what is in their belly pulling up the contents of the stomach.  After a few days he had nothing in his stomach following the tube feeds that lasted 2 hours but plenty after his nursing sessions which lasted 30 minutes. 

When we started talking about going home his Doctors wanted to keep the fortifier, so my calorie output was tested.  They expected 20 cal/oz, which is the healthy pair average.  They were shocked to discover I made 31.5 cal/oz.  All fortifier was immediately stopped, we went home exclusively latched and now 6 years later our NICU has it's own milk bank and only give human milk to the micropreemies.  

If you are interested in more resources for babies born with congenital Heart Defects (CHD), please see links below. 

The American Heart Association supports breastfeeding in babies with CHD. 

The “work” of breast-feeding is actually less than the work of bottle-feeding. Sucking, swallowing and breathing are easier for a baby to coordinate, and the amount of oxygen available to your baby is greater while breast-feeding than when bottle-feeding. In general, when compared to bottle-fed babies, breast-fed babies with congenital heart defects have more consistent weight gain.

— The American Heart Association

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Check out the previously published article's on Krysta's story

"The Virtual Breastfeeding Culture" by Lara Audelo ch5

Breastfeeding Today- February 2014- "Premature Birth and the Virtual Breastfeeding Culture"


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