We know that pregnancy can be a scary time. We know that sometimes it’s just too much to read about sick babies, much less babies that pass away, but we’ve asked our friends, family and even strangers to share this letter on forums, emails and anywhere else.
We don’t want you to spend your pregnancy in fear, but we want to tell you about something that we all wish someone had told us.
Sometimes, your baby’s heart doesn’t form right, and your baby is born with a congenital heart defect—often this happens in families with no history of CHDs, like ours. Many of these babies are diagnosed in utero. Most of these babies live and even thrive.
It’s more common than we thought, affecting about 1 in 100 babies. Our babies weren’t detected until after birth, and we want to give your babies a better chance.
Recently, the federal government recommended that every baby be screened for heart defects with something that’s not painful, simple, non-invasive and inexpensive, pulse oximetry. And, it won’t interrupt important mother-baby bonding time—mom can hold baby during the screen done sometime after 24 hours of life. The American Academy of Pediatrics and others endorsed that recommendation, but every baby isn’t screened yet.
We want you to talk to your doctor about it. We’d also like to make you aware of the signs of CHD in an infant: excess sweating, beaded sweating on the child’s forehead, trouble feeding, turning blue and tiring during feeding.
Chances are really, really good your baby isn’t 1 in 100, but if s/he is, we want you to know.
Natasha (Mom to Max)
Please, if you can, share this letter in a way that you feel comfortable- tell someone, post it to your Facebook page, email it, whatever way you would like. Chances are, someone knows of an expectant mom who may have never heard of congenital heart defects. I am a second-time mom to a CHD survivor and still had never heard of it until a late diagnosis. I've always wanted to tap every shoulder of a every expectant mom that I've come across but always feel awkward. But if we don't say anything..even through the written word..then awareness won't spread and we're at a standstill..right where we started before.
Natalie is 4 years old, 2 years post-Fontan, and is 1 in 100.