Congenital Heart Defect Network - Designer Heart

Anyone (a survived baby who now a married woman with kid/s)Having a Pulmonary Atresia Hypoplastic Right (or Left) Ventricle?

Yes, is anyone of you here who have survived when was a baby who now a married woman with kid/s, or a parent ---> having a Pulmonary Atresia Hypoplastic Right (or Left) Ventricle? Please let me know if you or are these or you know someone. Am still on state of adjusting the case of my precious one and only baby girl who was just born and had her BT Shunt, or first open-heart surgery days ago. I need some good vibes or some positive cases. It bleeds my hurt seeing and thinking about my baby. What hurts me most was that she was extremely fine and healthy when I normally delivered her with extremely fine tests and necessary exams during my pregnancy. I followed all doctor's advises and all. I ate the foods and get rid of the not good to eat as well as all the measures given by doctors. Until about two days after she was born, she was diagnosed to have a Cyanotic Congenital Heart Defect as Pulmonary Atresia Hypoplastic Right Ventricle. Please let me know if you, a parent or know anyone who has the same as my case. Positive cases only please. Thanks in advance.

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Comment by ABC Miles on October 1, 2011 at 3:59pm: Thank u so much Colleen Lachenman for your very inspiring reply. You just don't know how happy I am upon reading this message of yours. Tears flowed unto my cheeks, I just cannot helped it, happiness that is. Happiness for my precious one and only baby girl. I acted overly concerned, I thought. Thanks much again. God bless!

By the way, about the defects, she was diagnosed as having a pulmonary atresia, hypoplastic right ventricle and no other than. I hope there's no complications or such. She's now about 3 weeks old and active. She smiles a lot and really brings happiness to me and my husband upon visiting her in CHLA. She's currently on her recovery over 2 weeks that's 2-4 weeks from her surgery. Then be home and home recovery for 8 weeks, then on her 6th month, will undergo for her 2nd one. She's very tough and I believe on her ability to survive on this. Other than that, am already prepared for everything even if it's hard having no family around (because they are very far miles away, I just want to thank my family and friends for the prayers) to help me of taking care of a newborn baby. God will help, I know, GOD is great! Regards and thanks again.

Comment by Colleen Lachenman on September 30, 2011 at 5:00am: My daughter was born with multiple congenital heart defects....in 1983. The medical advances they have made in the last 27 years since her birth are amazing...and continue. I want to share her success story with others because back in 1983 not only couldn't I find anyone who had her defects with all her complications....I couldn't find anyone close to it who had lived to adulthood. It's wonderful that they have a surgical procedure for your daughter. Following my daughter's corrective surgeries she had a very active childhood. The doctor said she would restrict herself if need be. Lost two pregnancies before her and went on to have two more children who are completely healthy. They hadn't expected my daughter to live, definately not to give birth. She would ask the doctors from time to time as a teenager if she ever could. She successfully carried two pregnancies and has two very healthy boys. As your daughter grows medical advances with grow with her. I am a registered nurse and as I said before it's all amazing! Best of luck to you and your daughter. My daughter also had the BT shunt in 1984. The best advice I can give you is enjoy each and every day with her. It is truly a gift. I spent the first two weeks of her life worrying and waiting for her to die (as they told me she probably would). I decided one day I couldn't and wouldn't live like that! It's been a great 27 years! and I look forward to many many more with her and my two wonderful grandsons! I don't know if this shows you her defects: TGA, ASD, VSD, (actually had no septal wall), PDA, coartation of aorta, right frontal lobe cerebral infarct; bypass at 5 days and 9 months; open heart TGA correction age 6