Open Heart Operation - Congential Heart Disease

[ngais]

Dear all,

I am a desparate father whose daughter is going to have an open heart operation soon. She is only 8 months old but she is tinny. She is diagnosed with a rare heart disease called Cor-Triatriatum.

Essentially, there is a membrane that blocks her left upper/lower valve of her left heart. She is breathing heavily and doesn't have much appeitite to eat.

She is still in the hospital now and we are discussing with the doctor when to have the operation.

We are using a doctor called Dr. Maurice Leung. According to many, he is the best in town. Has anyone here worked with him? Any other doctor you have come across as second opinion is always helpful.

For those whose babies have went through this major operation, can you share your experience in terms of risks and post-operation care?

I saw the thread called congential heart disease and wondering if I can talk to some of the parents.

 

[mumsy]

Dear Ngais,

My thoughts and prayers are with you.
I am 'Mumsy' who started the other thread on congenital heart disease. My son has already turned 1year and developing really well. We are thankful he is not an urgent case so he has not had the surgery yet.

I did correspond by email with another mother whose daughter went through open heart surgery. Although her situation was different, she was a tremendous help and generously shared her own personal experience which was a great source of support and comfort to us. It has prepared us for what to expect when the time comes. I'm not sure if she is still in HK but I will try and email her and ask her permission to allow me to share her emails with you.

Is your daughter receiving treatment at Grantham Hospital? They perform open heart surgeries on babies and children every day so rest assured that your daughter is in the best hands possible.

Please pm with your email address, and I hope I can forward you my emails and offer any other support. Also are you english or cantonese speaking - if you speak Cantonese there is a parent support group at the Children's Heart Foundation. I did try to found out if there were any english speaking parents but was unable to get any replies.

 

[a_chan]

Dear ngais,

I will pray for your baby and your family.

I'm a mother of a 1Y9M daughter, and I was diagnosed of myxoma (heart tumor) in a very rare position 1 month ago. I haven't done the operation yet, but I understand the fear that you are facing. Though I'm a mother, I'm also my parents' daughter, so they are as well troubled and worried.

I've been meeting specialist in cardiology a lot this month, so ifyou want to have some 2nd opinion, do drop me a PM.

Also, have you been to Grantham Hospital as well? The doctors and nurses there are really nice.

AC

 

[Bear Lau]

Maurice Leung is definitely is one of the best in town. He use to be the head of the cardiac surgery(paed) in Gratham Hospital before he went into private practice few years ago. I worked with him before in the hospital, he really knows what he is doing. He also treat patient very nicely.

All the best to your family.