baby girl with hypoplastic left heart syndrome/hypertension

[stacy02]

My name is stacy, and my baby girl was born 10/12/07 with hypoplastic left heart syndrome. she was only 4lb 14oz at birth and she had to go in for emergency surgery because one of the valves was closing off. they also put bands around her pulmonary arteries to "hold her over" until she was big enough for first stage. she is now 6 1/2 months old and the other day i took her into her cariologist because her o2's were low and heart rate was high and she was blue. when they did a heart cath they found her hypertension. i dont really remember the numbers, i want to say they said a mean of 25? they also talked about a heart transplant. we are home now, her o2's are staying up and she is not blue anymore. they have put her on viagra for now to see if that will help her any. i need to know if there is any hope. our whole family is just devastated. we have come so far and to hear this is just crushing. i tried looking up hypoplastic left heart and hypertension and i found this page. please if you could give me some peace. or the truth.

thank you for your time,
Stacy and baby girl from iowa

[andre94]

I chanced upon this website....my son is born with HLHS.  We are chinese origin and live in Singapore.

You may want to check 'Cleveland Clinic' website for more information or Royal Melbourne Children's Hospital.  Apparently, these are the 2 veyr popular hospitals that deals with HLHS children....

I know how devastating the situation can be but do not give up hope........Good luck...

[nettie822]

there is a hlhs support group. Hope for HLHS, is the name for it. There may be someone there that had simmilar experiences.