Hello! I am new to the list. My name is Shannon and I'm an LLL Leader in
Maryland. My son Brandon is 14 months old and has CHARGE syndrome, a series of
birth defects that often involves the heart, and a host of other body systems.
He was born with Tetrology of Fallot, which was repaired at 2 months of age.
He also was born with little to no suck and stayed that way for about 2
weeks. He is also quite "pink" and healthy, but due to low muscle tone, still
seemed very weak. In any case, Brandon got my milk through a naso-gastric tube
while we tried to figure out what to do. I would always hold him in a nursing
position while he was being fed, and sometimes he would tolerate my nipple in
his mouth, but he would never latch. I tried coaxing him to suck by
expressing milk onto his lips and also rigging up an SNS. All that got pretty messy! I
did however find that he would suck well on my finger with a feeding tube
attached (as long as the tape kept the tube firmly in place). That led me to
think that he needed firmer stimulation than the breast was providing, so we
tried a nipple sheild (x-small at first). It was an amazing transformation, and
within another week, all his feedings were at the breast and they let him
come home! After another week or so, the nipple sheild fell off mid feeding and
he just latched right on. We've been exclusively breastfeeding ever since.
We also had a very short incident of this post-repair. They had warned me that
being on a ventilator can lead to some feeding issues, but he overcame them
very quickly. Despite a healthy appearance and good 02 saturations, babies
with heart issues (especially ToF) are very good at conserving energy. If this
baby is very new and still hospitalized, they may place him on a medication
for his heart. That made a big difference in Brandon's appetite, as did having
the defect fixed. I hope, despite my lack of technical information, that
this is helpful to your mom! ToF is a scary diagnosis, even by itself, and I
remember how hard we fought to breastfeed. I would be more than happy to offer
my support in any way. Best wishes to this sweet little baby.
Shannon Thomas
LLL Leader, Laurel, MD
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