Pulmonary Stinosis & poor feeding newborn


#21

Hi,
Yes Children’s in Denver. They have been awesome to work with. We have the whole test ekg and eco run every year. When he was younger i was there every 2 months. Here is another article:

http://my.clevelandclinic.org/heart/disorders/valve/valvetreatment.aspx#mini

Does your nephew have a PVS? The VSD and ASD are also very common.


#22

Yes, Noonans babies are hard to feed. One of the characteristics of Noonans syndrome is a high pallet, which makes breastfeeding hard, and sucking from a bottle/nipple hard. My Nonoons baby was born 7 weeks early and was tube fed for the first 6 weeks of his life. It was a constant struggle to feed him after that. We had a feeding therapist come out to my house twice a week to try to help me feed him the best way possible and do oral exercises with him to help him learn to eat. The doctors immediately (incorrectly) diagnosed him with reflux. I feel like reflux is a new fad and any baby who cries is diagnosed with it. I knew he didn’t have reflux and sure enough, 2 years later he was diagnosed with Noonans syndrome so now I know I was right. Anyways yes, you are right that noonans babies can be hard to feed. I’m surprised they are so anxious to do the blood test. We are doing it next week and it is going to cost us $5700 USD.