About Alyson's heart

Alyson has an 8.5 mm VSD. That is a ventricular septal defect-a hole in her heart. From our extensive research and questioning of health care professionals, it seems that 8.5mm would be classified as a moderate to large hole.

Here are a couple links to websites that can explain a VSD much better than I can:

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/vsd.htm

http://www.americanheart.org/presenter.jhtml?identifier=11066

http://www.mayoclinic.com/health/ventricular-septal-defect/DS00614

We do not know at this time if Alyson will require surgery once she is home. Some VSDs close on their own or at least get small enough that she could just live with it. Even with a small hole though, if the heart is working too hard to compensate for it or the valves are getting weak and the chambers are getting enlarged, then surgery to repair the hole would be indicated.

Repair of a VSD entails open heart surgery with placement of a Gortex patch over the hole. Repair of atrial defects can frequently be done with a catheter procedure which is much less dramatic than open heart surgery but unfortunately that is not an option for Alyson since her defect is between the ventricles. Alyson's medical report indicates that she already has some enlargement of her heart and some regurgitation in 3 of the 4 valves (that means they are a little floppy and leaky). The valves could improve with growth alone but should definitely improve following surgery to repair the VSD. If one or more of the valves has become too weak to improve because of delay in repair of the VSD then she may require a valve replacement at some point. We're hoping that we can avoid that.

It is possible that Alyson has already had surgery in China but we have not received an update and may not ever. It is not entirely unusual for a family to not find out about further medical treatment that has been done for the child until they arrive in China. I have read about a family that was preparing for their new son from China to have surgery soon after his arrival in the USA but when they went to get him in China and were with him in the hotel room for their first night as a family, they removed his clothes to give him a bath and noticed a 6 inch scar on his chest! He had already had his open heart surgery and NO ONE said anything. The family had asked the nanny that handed them their son earlier that day how his health/heart was and she just nodded and smiled and said it was good. It didn't occur to her to mention that he had surgery 2 months ago. That seems crazy to Americans but the Chinese view the flow of information very differently.

The Chinese orphanage directors and staff care very much for the babies and would not hesitate to secure needed medical care including surgery for the children if they need it. It just doesn't seem to be a priority to them to update anyone on changes in medical status. We don't know if it's that the orphanage doesn't update the CCAA or if they do update the CCAA but the CCAA doesn't pass the information along to the agency that holds the child's file.

We requested an update 6 weeks ago today and our agency is trying to get one for us but the orphanage and/or the CCAA are under no obligation to provide an update if the information we have is less than a year old. Our information is from September 2006. :-(

The good news is that the Chinese doctors do an excellent job of repairing heart defects. Most of the US pediatric cardiologists that so follow-up echocardiograms on these kids have said that the repairs look great.

So at this point, our motto remains the same: Prepare for the worst but hope for the best! :-)