Noonan Syndrome (NS)
Support Group Introductions

Lage, Patricia (as of 1/97)

My name is Patricia Lage and I have a niece, Brandy Marie, born 12/9/96, C-Sect at 35 weeks due to known Pulmonary Stenosis. Her parents, Karen and Brendan Gallagher, do not have access to the Internet, so I'm it. She had Angioplasty when she was 10 days old, which turned out great (severe stenosis now mild) except for some intestinal bleeding that started shortly after the procedure. Doctors never found the cause, it stopped and she went home 12/27/96. Cardiologists seem to think her PS was typical and not Noonan's. Geneticist said he thinks she has Noonan's because her left ear is wide on top, one of her nipples is off to the side, extra skin on back of neck, some edema at birth, pulmonary stenosis. Known problems during pregnancy - polyhydramnios, possible spontaneous regression of cystic hygroma (explained away as something else after it disappeared), bad Alpha Fetal Protein, early labor, PS, yellow amnio fluid on delivery date. This was Karen's second horrible pregnancy. Her first turned into disaster when she went into labor at 24 weeks and delivered a 1 lb 11 oz little girl, Katie, who struggled for a week to live, but passed away 8 days after birth. She needed surgery for a blocked intestine, but they couldn't stabilize her and when she started going really downhill they opened her up, but her intestines and stomach were too far gone to save her. Karen had the Polyhydramnios and a bad Alpha Fetal Protein with Katie also, but when she asked the mid-wife to talk to the doctor, she was told to come back in 3 weeks. Needless to say Karen and Brendan learned a lot from their first experience and got much better high risk prenatal care the second time around. Brandy was 7 lbs, 18 1/4 in at birth, and at 5 weeks she was 8 lbs, 20 1/4 in. She is currently doing great, eating breast milk and formula with no problem and quite a cutie. My sister, Karen is a head nurse in a nursing home (always wanted to work in Pediatrics - sometimes God answers your prayers a little differently than you would expect) and Brendan is a truck mechanic. They live in Western Massachusetts.

Patricia Lage

LAGE_PA@P1.LMCE.LMCO.COM
New Ipswich, NH
 

 
   

 

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