Noonan Syndrome (NS)
Support Group Introductions

Mette (as of 5/97)

Hi everyone,

My name is Mette and I live with my husband Tolga in Copenhagen, Denmark. I'm a banker and my husband is a Turkish/Danish interpreter and we have been married for 6 years now.

Our daughter Mine was born as a 32 weeker on the 7th of April 1996 and her weight and length was normal for her age, but they very soon found that she had a heart condition. She was diaognsed with an ASD and a pumonary stenosis. We stayed at the hospital for 2 1/2 months. She ate very well, but not much and seemed very short of breath and when she was 3 months (adjusted age) she only weighed 3400 grams (7.495 lb) and after a lot of pushing she had her heart surgery on the 31 August 1996. The ASD was closed, but first after 3weeks she left the respirator and went on CPAP for further 5 weeks.

Mid October the heart pediatritian diagnosed her for Noonan. Cardiologically seen she is a Noonan, but she has according to the Syndrome specialist no physical signs. She is still a small girl, 6000 grams (13.22 lb) April '97, at a corrected age of 10 month. Mine's vomiting stopped suddenly after a cold in end January and it has been very few times since. She is set to take 720 ml per day = 120ml per meal and she will still not take it all. She only drinks 40 - 70 ml herself and the rest is given by tube. We have tried to introduce her to porridge and the food that we eat and she really shows a positive attitude to it all. So it seems that we are seeing a light at the end of the tunnel. The latest is that they have discovered a small VSD in her heart.

Great that the Internet opens the possibility to meet all you folks! It is really limited how I else should find the time to seek the information about NS and get the support that you need in a situation like this.

from Scandinavia

Mette, mom to Mine
 

---

The Noonan Syndrome Support Group, Inc. and any associated parties will not be held responsible for any actions readers take based on their interpretation of published or disseminated material. Please review medical treatment and decisions with your physician.