Hi, My newborn twin(fraternal) granddaughter was born with OAVSa mild form of Goldenhar- she has bilateral macrostomia. She will be having surgery at St Rosa Children's Hospital with her Craniofacial Surgeon Dr. Aaron Mason , hopefully in July. At her consult with Dr. Mason, he discovered a murmur and referred to a cardiologist. Before that visit, her pedetrician also noted a murmur in her and her twin. She also noted another sound and was immediately bumped up for her cardio visit. With a EKG and an Echo being performed the cardiologist said she has the "regular hole that we are all born with, but that hers appeared to be a little larger and is hoping it will still close on her own".
He will re-evaluate in 6 months. Does this sound accurate to you? I know that you can make no type if Dx, just only want to know if the info about having a regular hole is accurate? All of the rest of her heart-chambers, vessels, etc appears normal.
She has great difficulty when using the Haberman nipple and pants when feeding. She was taken once to the ER for extreme panting and hyperventilating (according to ER). She was given EKG and they said she was okay and released her.
The cardio did tell them to watch for blueness occuring around mouth, hands and feet. None so far.
If you are able could you just give me your opinion, so this grandmother can rest better at night. My concerns is for the heart, panting under general anesthisia.
She also has mulitple skin tags around ears and a few around her mouth. They will check her spine at around 1 year of age. ?? Why so long to X-ray that?
I am a long-distance grandma and would appreciate greatly any input you may have.
Dr Mason was once a doctor at your Hospital.
Obviously, I can't say for sure what this is, but the description sounds mostly like a patent foramen ovale. This is a hole (actually a flap valve) between the upper two chambers of the heart that all babies need in utero and that typically closes by age 1 year. However, 25% of all adults have it remain open. It typically causes no problems, unless she has a disorder in which she forms blood clots easily or if she is able to get nitrogen bubbles to form in her blood easily (such as in deep sea diving or high performance jet flying). I cannot address the other concerns that you have, as they are noncardiac issues. Best of luck, though.
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